Menopause: Weighing Up the Benefits and Risks of Hormone Replacement Therapy

This is the seventh part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article shows the benefits as well as risks of hormone replacement therapy.

When considering hormone replacement therapy (HRT), it is important to think about the benefits in terms of helping with symptoms during the menopause transition and the long-term benefits.

HRT protects against osteoporosis and cardiovascular disease (CVD) (depending on individual circumstances), and protects the vaginal and bladder tissues.

If you are under 60 and in good health, the benefits of HRT far outweigh the risks. However, the risks may be higher if you are overweight, smoke or have a family history of certain conditions. These risks need to be taken into account when considering which HRT is best for you.

Benefits and risks of hormone replacement therapy

The Long-Term Benefits of Hormone Replacement Therapy

Osteoporosis

Oestrogen is important for bone health. Bone density decreases after the menopause, increasing the risk of osteoporosis (thinning of the bones). This in turn increases the risk of fractures (breaks), particularly of the hip, wrist and vertebrae (the bones that make up the spine). Osteoporosis affecting the vertebrae can cause loss of height and back pain.

HRT reduces bone loss and the risk of fractures. A long-term US study of 81,000 postmenopausal women showed that the risk of hip fracture increased by 55% when women stopped taking HRT.

Women under 60 who have risk factors for osteoporosis (for example, fracture or loss of height) or a family history of the condition should consider HRT to reduce the risk of osteoporosis and fractures.

Terminology Tip

Osteoporosis means thinning of the bones. It particularly affects the wrists, hip and spine.

  • Regular weight-bearing exercise is important to keep your bones strong – walking, running or any other form of “impact” exercise.
  • It is also important that you have enough calcium and vitamin D in your diet, and exposure to sunlight, as these are also important for bone health.

Cardiovascular Disease

CVD – which includes stroke and heart attack – is the leading cause of death in women over 50. Heart attack is the most common cause of death in postmenopausal women.

Cardiovascular disease

Lack of oestrogen after the menopause is one of several factors that increase the risk of CVD. Others include smoking, obesity, high blood pressure, diabetes and high cholesterol.

Oestrogen (either natural oestrogen before the menopause or the oestrogen in HRT) improves blood lipids (fats): it increases high-density (“good”) cholesterol and decreases low-density (“bad”) cholesterol. This protects against the development of atherosclerosis (a fatty layer in the blood vessels), which is the main cause of CVD.

Starting HRT within 5–6 years of the menopause protects against CVD: it reduces the risk of CVD by 40% and decreases the death rate from CVD. HRT also decreases the risk of stroke if started during the menopause transition.

As long as you start HRT early, you do not need to come off it at age 60, but it may increase the risk of CVD if started after age 60.

The beneficial effects appear to be greater in women who take oestrogen only.

Arthritis

Oestrogen helps to maintain the cartilage that lines the bones in joints and the discs between the vertebrae in the spine.

Arthritis (hand X-ray)

Cartilage can become thinner after the menopause, increasing the risk of arthritis and causing backache and other joint pain.

The oestrogen in HRT protects the cartilage, decreasing the risk and severity of arthritis. Progestogens seem to neutralise some of this benefit, but the Mirena intrauterine system (IUS) can be used to reduce the amount of progestogen in the bloodstream.

Memory and Brain Function

Long-term use of HRT within the first 5 years of the menopause has been shown to improve memory and reduce the incidence of Alzheimer’s disease.

Other Beneficial Effects of HRT

  • Studies have consistently shown a 20% reduction in the incidence of bowel cancer in women who take HRT compared with those who don’t.
  • Women using HRT have a lower incidence of stomach cancer.
  • Cataracts have been shown to be reduced by 60–80% in women taking HRT.
  • Glaucoma (high pressure in the eye) may be less common in women taking HRT.
  • Oestrogens seem to protect teeth, possibly by preserving the jaw bone.

The Risks of Hormone Replacement Therapy

Blood Clots

Deep vein thrombosis (DVT; blood clots in the leg) is the most significant risk associated with HRT. Pieces of a clot may break off and lodge in a blood vessel in the lungs. This causes a blockage called a pulmonary embolism (PE). Symptoms can include shortness of breath, chest pain when breathing in and coughing up blood.

Blood clots

  • About 1% of PEs are fatal. Together, DVT and PE are referred to as venous thromboembolism (VTE).
  • The risk of VTE is very low in women under 60.
  • The risk increases with age. The risk is also increased by lifestyle factors such as obesity and smoking, and being immobile for a long time (for example, on long flights).
  • In a study of 1,000 women who took oestrogen-only HRT for 5 years during their 50s, 2 had DVT.
  • This number increases to 5 per 1,000 with combined HRT. However, there is no increased risk if oestrogen is taken as a patch, gel or spray.
  • There is also no increased risk of DVT with tibolone, which is sometimes used instead of HRT.

Cardiovascular Disease

HRT is known to protect against CVD when started early but women who start HRT after 60 have an increased risk of CVD. This is thought to happen because oestrogen dilates (stretches) the blood vessels, causing the fatty lining in the arteries to break off, which may cause a blockage.

If women do start HRT later in life, the lowest possible dose should be used and, ideally, patches, gel or spray rather than tablets.

Stroke is rare in women under 60 but it is the second most common cause of death in older women. The risk may be reduced by using the lowest dose of HRT, ideally applying it with patches, gel or spray rather than taking tablets.

Gall Bladder Disease

HRT has been found to increase the risk of gall bladder disease (gall stones and/or gall bladder inflammation). This risk may continue for some years after HRT is stopped. Using oestrogen via the skin as a patch, gel or spray reduces this risk and is therefore recommended for women who are potentially at risk (for example, if you are overweight).

 

Please check out the other posts of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

World AIDS Day 2021: 33 Years and Counting

The first World AIDS Day was marked on December 1, 1988. Now, 33 years later, we still have good reason to raise awareness for the AIDS pandemic, call attention to the millions who are infected and remember those who have died of this disease. For the second year running, World AIDS Day takes place during another pandemic that has turned the whole world upside down. We turned to Ferenc Bagyinszky, Executive Coordinator of AIDS Action Europe, to speak about AIDS and COVID-19.

 

First of all, what are the similarities and what are the differences between the two pandemics?

There are several differences and similarities between the two pandemics; first and foremost there has been a tremendous difference in attention – political, media – and resources that have been dedicated to the COVID pandemic compared to the HIV and AIDS pandemic, which at the beginning did not receive any attention from political leaders. Ronald Reagan, the American president back then, did not even mention AIDS publicly before 1985, 4 years after the first cases were reported, and by that time the AIDS pandemic had killed thousands of people in the US alone.

We have seen a totally different response to COVID, most likely as it has been a generalized pandemic from the beginning that could affect anyone, while AIDS was thought back then to be only affecting certain marginalized groups of the society. There are also striking similarities manifesting in the inequalities in our societies; there is unequal access to the life-saving COVID vaccines, and those at the margins of societies have worse outcomes compared to the general community.

“There has been a tremendous difference in attention and resources that have been dedicated to the COVID pandemic compared to the HIV and AIDS pandemic.”

What have we learned from the AIDS pandemic that is helpful for dealing with COVID-19?

There are many lessons learnt, both from the mistakes made in the AIDS pandemic but also from the communities of people living with HIV and other key populations that could be or should be applied in the COVID pandemic as well. Community leadership and ownership of programs: prevention, testing, care and other support have been crucial in the AIDS pandemic; tailor-made services and messages that are sensitive and responsive to the needs and priorities of the communities affected by HIV and AIDS made a difference. We see in the COVID pandemic that most marginalized communities are again being left behind in the public health responses as they are not reached by the messages and measure. Local communities should have been more involved and funded to do the work from the very beginning in the response.

Another important lesson that we learned from the mistakes made in the AIDS pandemic is ignored again in the COVID pandemic. It is unacceptable that there is no universal access to a life-saving vaccine in a global pandemic, and there are huge inequalities in accessing other preventive measures such as masks or disinfecting liquids etc., putting the lives of millions at risk.

“We see in the COVID pandemic that most marginalized communities are again being left behind in the public health responses.”

In reverse, what insights from the COVID-19 pandemic will have an impact on dealing with AIDS?

We are concerned that many achievements that activists and advocates have fought for will be reversed or forgotten. The role of communities in fighting a pandemic has already been mentioned, and a human rights-based approach and the meaningful involvement of people living with or affected by HIV are key elements to a successful response, which has been constantly under attack from conservative governments. However, with the continuing COVID pandemic we see that decision makers again tend to turn to the tools of criminalization, unjustified breach of human rights, and lack of involvement of people and communities, which don’t work in the AIDS response and won’t work in the COVID response either.

The AIDS Action Europe team (source: AIDS Action Europe)

The AIDS Action Europe team (source: AIDS Action Europe)

There is still no cure for AIDS, but antiretroviral therapy has turned it into a chronic condition. What needs to be done to enable worldwide access to this lifelong treatment?

Accessing treatment is a complex issue; there are several legal, policy and other structural barriers that are different by region and country or communities. However, the affordability, i.e. the price of antiretroviral therapy, is still one of the major barriers to universal access, which mostly affect people in middle income countries, where patents and other agreements make the price of therapy unaffordable for the health systems.

“The price of antiretroviral therapy is still one of the major barriers to universal access.”

The vaccine against SARS-CoV-2 has been developed in record time. Why is there still no vaccine against HIV?

There must be reasons that a researcher could answer much better, such as the difficulty to develop a vaccine to a virus which uses the cells of the immune system for replication. But there is also the reason of lack of proper funding. In the last 2 years, multiple more billions of dollars went into the research for a COVID vaccine, compared to the last 20 years of research for HIV vaccine. And proper funding is always the issue of political will. Fortunately, the advances in the research for the COVID vaccine might also mean a huge leap forward in developing a vaccine against HIV, but it is still years or decades to go, especially with the current underfunding of the research.

“In the last 2 years, multiple more billions of dollars went into the research for a COVID vaccine, compared to the last 20 years of research for HIV vaccine.”

Do you fear that the current focus on COVID-19 will diminish attention for other conditions like AIDS and decrease further research for other diseases?

It already has. The AIDS response was way off the track with serious inequalities between regions and countries as well as within countries and communities. The COVID pandemic pushed it farther off track with resources and attention directed to the new pandemic; even less attention and funds remained for HIV work. Our member organizations suffered tremendous losses, mostly financial due to the COVID pandemic. If it wasn’t for their resilience and flexibility, the HIV and AIDS response, incidence and other outcomes would be in an even worse shape today. The world, including leaders of our countries, must reunite and live up to their commitment in fighting HIV and AIDS so we can reach our global targets and finally end the AIDS pandemic. We have all the tools and knowledge at hand, all we lack is the political will.

 

Many thanks for your time and your insights!

Menopause: Hormone Replacement Therapy

This is the sixth part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article focuses on hormone replacement therapy.

Hormone replacement therapy (HRT) replaces the oestrogen that you lose during the menopause transition, either alone or in combination with a progestogen. It helps to alleviate menopausal symptoms and also reduces the long-term consequences of the menopause.

HRT is recommended as the best treatment for menopausal symptoms – based on all the available evidence.

Products and delivery options for hormone replacement therapy

There are many products and delivery options for HRT, including tablets, patches, gels, a spray and implants. This allows your HRT to be tailored to your needs. A patch, gel, spray or implant may be more suitable than tablets for some women, including those at risk of blood clots. You may need to try more than one type of HRT to find the one that suits you.

HRT helps many women through their menopause transition, but it is not suitable for everyone.

Some women are concerned about the apparent risks of HRT reported in the media. The benefits and risks of HRT are explained in another post to help you decide whether you want to try HRT, and to help discussions with your doctor.

Combined Oestrogen And Progestogen HRT

Women who have a womb and are still having periods (even if they are irregular) need HRT that contains a progestogen. This balances the effects of variable levels of oestrogen (as occurs during the menopause transition), as unopposed oestrogen can cause the lining of the womb to become too thick.

Many women start on a sequential preparation, which includes a progestogen for 12–14 days of each 28-day cycle, so that there is a monthly withdrawal bleed (as with the contraceptive pill). Sequential HRT can be delivered as tablets or through the skin (transdermally).

Preparations with less progestogen can be used, but bleeding may be heavy (although infrequent).

Women then move on to a continuous combined oestrogen/progestogen product at about age 54. A progestogen is taken every day, so there is no monthly bleed. This “bleed-free” HRT provides the best protection for the lining of the uterus in the long term. (It isn’t used earlier in the menopause transition because it can cause irregular bleeding.) Continuous combined HRT is also delivered as tablets or through the skin.

Oestrogen-Only HRT

This is suitable for women who:

  • have had a total hysterectomy (removal of the womb and cervix)
  • have had a Mirena IUS fitted within the last 5 years – Mirena contains the progestogen levonorgestrel which is released into the cavity of the womb, protecting the lining.

Phytoestrogens and Other Alternative Therapies

Phytoestrogens are plant proteins that are similar to oestrogen, and they may help with symptoms during the menopause transition. They include soy products and isoflavones (red clover).

Evidence for the benefits of phytoestrogens in the menopause is mixed.

Red clover is more potent and better researched than soy, and some small studies have shown that it improves some symptoms in some women.

Red clover capsules are best taken at the time of day when symptoms are most troubling. They should not be taken by women with a risk or history of venous thromboembolism or hormone-sensitive cancers.

The use of black cohosh during the menopause is more controversial. It is approved for use in Germany as a non-prescription drug, but its effectiveness has not been proven. There are some concerns about its effects on the liver.

When considering any form of alternative therapy, it is important to think about both the risks and the benefits, as you would for a medicine prescribed by a doctor. If you don’t know whether something is likely to be beneficial, you may not want to expose yourself to even a low level of potential risk.

Testosterone

Testosterone is usually thought of as a male hormone; however, women also produce testosterone, but at much lower levels. Testosterone affects energy levels, sex drive (libido), muscles and joints. A woman’s testosterone level decreases significantly as she gets older.

Testosterone can be used during the menopause transition to improve libido (interest in sex). A small amount of a testosterone gel (one-tenth of the dose used for men) is applied to the skin. It is best applied to areas of skin where there is no hair, such as the inner forearm. (Testosterone can cause hair growth if applied to areas of skin with hair follicles.)

There are currently no licensed products containing testosterone available on the NHS. Some general practitioners are reluctant to prescribe testosterone out of licence.

 

Please check out the other posts of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

Long-Term Consequences of the Menopause

This is the fifth part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article addresses long-term consequences of the menopause.

So far, we’ve talked about symptoms that may occur during the menopause transition. However, it is also important to understand the long-term consequences of the menopause.

Oestrogen protects the cardiovascular system, bones, brain, and vaginal and bladder tissues. This protection is lost after the menopause, increasing the risk of CVD (heart attack and stroke), osteoporosis, cognitive decline, and vaginal and bladder problems.

While the menopause is inevitable, these long-term consequences are not. There are many ways to reduce the risk through lifestyle changes and HRT.

Cardiovascular Disease

  • Oestrogen protects the cardiovascular system (heart and blood vessels) during your reproductive years.
  • This benefit is gradually lost after the menopause, which increases the risk of CVD, including heart attack and stroke. CVD is the leading cause of death in women over 50.

Cardiovascular disease

Osteoporosis

  • Oestrogen protects the bones during your reproductive years.
  • After the menopause, women lose about 1% of their bone density each year. This puts them at risk of fractures.
  • Fractures related to osteoporosis are the most common cause of poor health in postmenopausal women.

Osteoporosis

Vaginal Dryness

  • Many women experience vaginal dryness during the menopause transition and postmenopausal years: instead of being stretchy and well lubricated, the tissues become dry and are more easily damaged.
  • Vaginal dryness may cause discomfort or pain during sex and may make smear tests painful.

Sex and the Menopause

For some women the menopause represents freedom from periods and the worry of becoming pregnant. However, for others the hormone changes during the menopause transition can affect libido (interest in sex) and cause problems such as vaginal dryness (urogenital atrophy) and soreness, which can make sex difficult or painful. This may in turn reduce sexual desire and arousal, and reduce pleasure and orgasm.

The changes associated with urogenital atrophy may affect sexual intimacy and the ability to have a physical loving relationship. Women also report feeling less healthy and attractive. This can lead to avoidance of sex and intimacy – an important part of a relationship for many people.

Urogenital atrophy is also a common cause of bleeding after sex (postcoital bleeding).

Practical Tips

  • Use lubricants to help during sex, and vaginal moisturisers to ease discomfort.
  • Explore other types of stimulation and intimacy with your partner. Sex doesn’t have to include penetration to be enjoyable.
  • Find alternative ways to show affection and share intimacy with your partner. Even if you don’t feel like having sex, affection and comfort are important and can help you feel better.

Further Steps If Needed

  • Your doctor can prescribe various treatments to help with urogenital atrophy.

Warning: If you experience any bleeding after the menopause, see your doctor.

Do I need contraception during the menopause transition?

Bladder Problems

  • The bladder and other tissues in the urinary system are also affected by oestrogen levels. The changes in the vagina and urinary system are sometimes called urogenital atrophy.
  • Many women experience bladder problems during the menopause transition and postmenopausal years. Problems include needing to pass urine more often (which may disturb sleep) and incontinence.

Cognitive Decline

  • Many women have problems with short-term memory and “brain fog” during the menopause transition, but this usually improves after the menopause.
  • The lack of oestrogen after the menopause may increase the risk of cognitive decline (decrease in memory and thinking skills) and possibly dementia.

 

Please check out the other posts of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

Hyperhidrosis Awareness Month 2021: An Interview with Dr Dimitris Rigopoulos

For this interview we turned to Dr Dimitris Rigopoulos, the founder and Co-Editor-in-Chief of the scientific journal Skin Appendage Disorders. Whether you actually suffer from hyperhidrosis, suspect you might be affected by this disorder or, as a healthcare professional, face the challenge of diagnosing and treating hyperhidrosis – here are the insights of an expert! Please also note that November is Hyperhidrosis Awareness Month.

 

First of all, what is hyperhidrosis?

Hyperhidrosis is the condition where we have uncontrollable overproduction of sweat, in amounts beyond what is important to maintain constant body temperature. This is due to an overstimulation of certain receptors on the eccrine sweat glands, which are simple, coiled, tubular glands present throughout the body. Hyperhidrosis affects almost 3% of the population and is more common in people between the ages of 20 to 60 years. Both sexes and all races are affected equally.

“Hyperhidrosis affects almost 3% of the population.”

What are the causes for hyperhidrosis, and is it a hereditary condition?

Hyperhidrosis is subdivided into primary and secondary hyperhidrosis.

  • Primary hyperhidrosis is bilaterally symmetrical, focal excessive production of sweat and it involves the armpits, palms, soles, groin, head and face. It’s about younger patients, patients suffering for more than 6 months, those with a family history and those with bilateral involvement. Patients suffering from this condition experience a negative influence on their quality of life and on their well-being, comparable to many common inflammatory dermatologic diseases. The cause of primary hyperhidrosis remains obscure. It is possible that genetic factors may play a role in the development of the disorder, despite that it is not considered a hereditary disease.
  • Secondary hyperhidrosis can be focal or even generalized, its symptoms start later in life, and it is caused by an underlying disease, mainly neurological (e.g. Parkinson’s disease), or use of medication, such as dopamine antagonists, antipsychotic drugs, etc.
“The cause of primary hyperhidrosis remains obscure.”

What are the treatment options?

It is a promising time to deal with primary hyperhidrosis, as we have a great number of surgical and non-surgical treatment modalities.

Non-surgical treatment includes topically (externally) applied and systematically (internally) delivered drugs.

Topically applied drugs:

  • Aluminum chloride hexahydrate 20% for 3–4 nights and then nightly as needed is an easy, popular and over-the-counter topical treatment.
  • Glycopyrronium 0.5–2% solution is also an option.
  • Botulinum toxins are used in the form of topical injections, with excellent efficacy rates.
  • Tap water iontophoresis, which uses electric current, is applied mainly for controlling palmo-plantar hyperhidrosis (excessive sweating from the palms and soles), every 48–72 hours (long-term treatment).
  • Microwave energy thermolysis is also approved by the Food and Drug Administration (FDA) for the treatment of primary hyperhidrosis.
  • A novel device using high-intensity microfocused ultrasonography produces thermal coagulation points within the skin and is now investigated for the treatment of the disorder.
  • Laser therapy with different devices is also an option for such patients.

Systematically administrated drugs are mainly used in patients not responding to topical drugs, injections and different devices.

Oxybutynin (anticholinergic medication) 5–10 mg/day can be used with good results.

Surgical treatments include sympathectomy (removal of the ganglia responsible for sweating), which can be also performed endoscopically.

In secondary hyperhidrosis, it is obvious that treatment of the underlying disease and discontinuation of the possible responsible drug is the treatment of choice.

“We have a great number of surgical and non-surgical treatment modalities.”

What new insights and developments can people expect with regards to the treatment?

Good education of patients is mandatory. Topical application of new drugs that can be effective, or new formulations of older drugs (botulinum toxin in the form of a gel), are future options for better controlling this rather frustrating condition.

 

Dr Rigopoulos, many thanks for your time and your insights.

Menopause: Managing the Common Symptoms

This is the fourth part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article gives advice and practical tips on the management of the most commons symptoms.

Heavy Bleeding

Irregular or heavy bleeding is often an early symptom of the menopause transition. You may have less of a gap between heavier periods, or you may go for several months without a period.

Bleeding is unacceptable if it is heavy for you, regardless of the amount of blood you lose or how much sanitary protection you require.

Practical Tips

  • Keep a track of your periods for discussion with your doctor. Make a note of: when they start, how long they last, how heavy they are, any spotting in between periods, and any abnormal bleeding, pain, discomfort or other symptoms.
  • Wear panty liners or protective underwear if the timing of your periods is unpredictable.
  • Use high-absorbency tampons or pads during your period and change them every 2–4 hours.
  • Keep using contraception if you are under the age of 55. You can get pregnant during the menopause transition.

Further Steps If Needed

  • Talk to your doctor if you are concerned about heavy bleeding to rule out other causes, such as fibroids.
  • Talk to your doctor if you are feeling tired or look paler than usual. You may have anaemia. Your doctor can do a blood test and may give you iron tablets.
  • Non-steroidal anti-inflammatory drugs, such as ibuprofen, can help with menstrual cramps and may reduce your flow by up to 30%.
  • An intrauterine system (IUS) that contains 52 mg of the progestogen levonorgestrel reduces bleeding in most women without changing the menstrual cycle. Only the Mirena IUS is licensed for use as part of hormone replacement therapy (HRT).

Hot Flushes

Hot flushes are a sudden feeling of intense heat that spreads throughout the body. They may last seconds or minutes, and may be accompanied by reddening of the skin, sweating and sometimes palpitations (rapid heart rate). Hot flushes can lead to embarrassment and anxiety.

Hot flushes are one of the most common and well-known symptoms of the menopause transition. In a national survey conducted on behalf of the British Menopause Society (BMS), 79% of women aged 45–65 experienced hot flushes.

In general, women get hot flushes for an average of 5 years, although it can be a lot longer than this. Some women experience very few, whereas others may get several hot flushes a day.

Hot flushes

Practical Tips

  • Wear several thin layers of clothing, and choose clothes that you can remove quickly and easily.
  • Carry a fan with you, or try neck-cooling scarves/bandanas.
  • Cool your face with cold water if you feel a hot flush coming on.
  • Avoid triggers such as spicy food, alcohol and caffeine.
  • Check whether any medicine you are taking increases the risk of hot flushes; talk to your doctor if you think this is an issue.
  • Use relaxation and breathing techniques to avoid stress and anxiety, as they can make hot flushes worse.

Further Steps If Needed

  • HRT is the recommended treatment for hot flushes and is highly effective.
  • Femal (bee pollen) has been shown to reduce hot flushes.
  • Your doctor may prescribe medications called SSRIs or SNRIs (selective serotonin- or norepinephrine-reuptake inhibitors). These medications are used to treat depression but can also reduce perimenopausal symptoms. An SSRI may be helpful if HRT is not an option.
  • Pregabalin, gabapentin and clonidine may also help to reduce hot flushes. All these medications have other uses.

Night Sweats

Night sweats are hot flushes that happen during the night. They can disturb your sleep pattern (and your partner’s), resulting in tiredness. Some women may have difficulty coping because of lack of sleep.

In the BMS survey, 70% of women reported having night sweats.

Night sweats

Practical Tips

  • Wear fewer and/or looser clothes at night.
  • Have two single duvets on your bed, so that you and your partner can each choose the level of warmth that works for you.
  • Try a cooling pillow.
  • Look out for triggers, such as spicy food, alcohol and caffeine.
  • Check whether any of your medications are associated with night sweats; talk to your doctor if you think this is an issue.
  • Try not to worry about how much sleep you are getting.

Further Steps If Needed

  • HRT is highly effective in controlling night sweats and improving sleep patterns.

Vaginal Dryness

Instead of being stretchy and well lubricated, the tissues of the vagina become dry and are more easily damaged. The terminology for this may be confusing but the author’s preferred term is “urogenital atrophy”.

Vaginal dryness is a very common symptom of the menopause transition, but women are often embarrassed to talk about it.

Urogenital atrophy may cause discomfort or pain during sex. It can also make a smear test difficult or painful.

In the BMS survey, 35% of women said they had experienced vaginal dryness, with 18% of those who had this symptom saying it was unexpected.

Practical Tips

  • Use lubricants during sex.
  • Try vaginal moisturisers, available from pharmacies.

Further Steps If Needed

  • Your doctor can prescribe vaginal moisturisers, which can be used twice weekly to reduce vaginal dryness.
  • Your doctor can also prescribe treatments that deliver low doses of oestrogen directly to the vagina. These are available as pessaries, creams or a vaginal ring.
  • Another treatment option is prasterone, a pessary inserted into the vagina on a daily basis. It releases a precursor hormone (dehydroepiandrosterone or DHEA), which is converted in the lining of the vagina to oestrogen and testosterone with virtually no absorption into the bloodstream. Both oestrogen and testosterone are important for tissue quality.
  • In general, urogenital atrophy is best managed with treatments that are delivered directly to the vagina.
  • If these treatments do not work, your doctor may prescribe a drug called ospemifene. It is taken by mouth and improves tissue quality. It should be used alone, not added to HRT.
  • It is important to keep using whatever your doctor has prescribed for vaginal dryness for several months. Some products can be used for life.
  • If you are due for a smear test, use of these treatments for 3–6 months beforehand will help make the procedure easier. (It is important that you continue to have regular smear tests.)

Bladder Problems

During the menopause transition you may experience a sudden or constant need to pass urine (urge incontinence), leakages during exercise or when laughing or coughing (stress incontinence), or both of these (mixed incontinence). You may also find that it is painful to pass urine.

A lack of oestrogen causes the tissues in your vagina and urethra (the tube that carries urine out of the body) to lose their elasticity. The pelvic floor may also weaken.

  • Getting older also has various debilitating effects on the pelvic organs and tissues.
  • When you are standing, most of your bodyweight bears down on the pelvic floor, so being overweight makes this worse.
  • Pregnancy and childbirth put pressure on the pelvic floor, especially if a baby was large, labour was prolonged or instruments were used to help the delivery.
  • Coughing and constipation can also stress the pelvic floor.
  • Some women have poor-quality tissue for genetic reasons.
  • The bladder tissues are also affected by oestrogen, so bladder problems can occur during and after the menopause transition.
  • Overactive bladder can increase the need to pass urine, including during the night, which disrupts sleep.

Pelvic muscles

Practical Tips

  • Pelvic floor exercises (also called Kegel exercises) strengthen the pelvic floor and can therefore help with bladder control. These exercises can also increase sexual pleasure.
  • You can identify the muscles of your pelvic floor by squeezing around your back passage as though trying to stop wind and at the same time squeezing at the front as if trying to stop passing urine. The front and back contract at the same time.
  • Exercising these muscles can help to prevent bladder problems and reduce problems that already exist.
  • Many resources and apps are available to help you learn how to do these exercises and to remind you to do them (forever). For example, the NHS Apps Library recommends the inexpensive “Squeezy” app.
  • Ask your doctor to refer you to a specialist physiotherapist if you feel that you need more help.
  • Other forms of exercise can strengthen the pelvic floor, particularly yoga and Pilates.
  • Have your last drink at least 1 hour before going to bed.
  • Try to reduce your intake of caffeine and alcohol, as these can worsen symptoms.
  • Try to avoid spicy foods as these may also irritate the bladder.

Further Steps If Needed

  • Your doctor can prescribe various treatments to improve urogenital tissue quality in addition to a medication for overactive bladder.
  • Additional oral medication may be required for women with overactive bladder or mixed incontinence.

Effects on Your Mood And Mind

You may experience changing emotions (emotional lability) at this time of life for many reasons, but the changes in hormones during the menopause transition may make this worse.

Common emotional issues include irritability, such as snapping for no apparent reason, low mood, anxiety, difficulty coping, lack of motivation, tearfulness and worsening phobias.

Lack of sleep – because of anxiety or night sweats – can make these symptoms worse.

Some women also report becoming more forgetful, poor concentration and “brain fog”.

Women who are prone to mood changes are more likely to experience emotional lability during the menopause transition. Premenstrual symptoms may be worse during the menopause transition.

Brain fog

Practical Tips

  • Look after your general health and wellbeing. This will help improve your mood.
  • Try to exercise regularly; it is a particularly good way to improve your mood, as is being outdoors.
  • Try relaxation techniques, breathing exercises and/or mindfulness. These can all help.
  • Take time to look after yourself, away from the stresses of life and the demands of others.
  • Tell your partner and family why you are feeling irritable. They are likely to be more supportive if they understand what you are going through.
  • If these (or other symptoms) are affecting your work, talk to your human resources team.
  • Get support by talking to your friends and other women.

Further Steps If Needed

If mood changes are affecting your quality of life, contact your doctor for help. There are a variety of treatments, including HRT and antidepressants (SSRIs and SNRIs), that you can discuss.

 

Please check out the other posts of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

Psoriasis Awareness Week 2021: An Interview with Dominic Urmston (The Psoriasis Association)

On the occasion of Psoriasis Awareness Week 2021, which ran from October 29 to November 4, we spoke with Dominic Urmston, Patient Advocacy and Communications Manager of UK-based charity The Psoriasis Association. Below please find insights into the work of the charity, novel treatments options for psoriasis as well as the organisation’s schedule for the awareness event.

 

Please tell us more about The Psoriasis Association and the work of the charity.

The Psoriasis Association is the leading national charity and membership organisation for people affected by psoriasis in the UK. We have three main objectives: to provide information, advice and support to those whose lives are affected by psoriasis; to raise awareness of psoriasis; and to promote and fund research into the causes, nature and care of psoriasis.

 

In accordance with these three main objectives, what is The Psoriasis Association currently doing to: i) support people with psoriasis; ii) raise awareness of psoriasis; iii) research psoriasis?

We provide easy access to accurate, up-to-date and evidence-based information about psoriasis, psoriatic arthritis and treatments. This is offered through our website, and social media channels: Facebook, Twitter, Instagram, LinkedIn and YouTube. We also maintain a dedicated helpline service by phone, email and WhatsApp and provide leaflets and information sheets to people with psoriasis and healthcare professionals free of charge. The forums on our website and our Facebook Group are safe spaces where people with psoriasis can share their experiences and find peer-to-peer support.

Our annual Psoriasis Awareness Week begins on 29th October (World Psoriasis Day), and we also raise awareness of psoriasis at events, meetings and exhibitions attended by our members, the general public, healthcare professionals and politicians. We provide leaflets and posters to hospitals, clinics and surgeries, and regularly speak at conferences to healthcare professionals on issues that really matter to patients. We support and sit on a number of parliamentary groups in order to ensure that the voices of people with psoriasis are heard in the English and Scottish Parliaments, and the National Assembly for Wales.

Through our annual research programme we award grants to high-quality projects. We also collaborate with various research studies and consortia to ensure that the voices of people with psoriasis and psoriatic arthritis are heard. We use our communities to help researchers both recruit participants to their studies and communicate their findings.

Source: The Psoriasis Association

What is the difference between psoriasis and psoriatic arthritis, and who is primarily affected?

Psoriasis is an immune condition which causes symptoms on the skin. The skin replacement process speeds up, taking just a few days to replace cells that usually take 21–28 days. This accumulation of skin cells builds up to form raised “plaques” on the skin, which can be flaky, scaly, itchy, and red on Caucasian skin or dark on darker skin tones. Psoriasis can occur on any area of the body.

Psoriatic arthritis is an inflammatory arthritis which affects around 1 in 5 people with psoriasis. It affects the joints (such as the knees or those in the hands and feet), as well as areas where tendons join to bone (such as the heel and lower back), causing tenderness, swelling and stiffness.

Most people who have psoriatic arthritis find it occurs after developing psoriasis, but some do develop the arthritis before they notice any psoriasis on their skin. Men and women are equally likely to develop psoriatic arthritis and, although it can occur at any age, it is most common in the first decade after being diagnosed with psoriasis. Psoriatic arthritis is not always linked to how severe a person’s psoriasis is. People with mild or moderate psoriasis can also develop psoriatic arthritis.

 

Which novel treatment options for psoriasis are on the horizon?

Since 2006 there have been great treatment advances for people with severe psoriasis or active psoriatic arthritis in the form of “biologics”. Biologics are mostly given by injection and are specifically designed to mimic chemicals that are naturally found within the human body. These biologic medications block or neutralise the activity of certain chemical “messengers” in the immune system which signal other cells to cause inflammation. By blocking this activity, these biologics are blocking the very mechanisms that lead to the over-production of skin cells and symptoms of psoriasis or the damage to bones and tendons in psoriatic arthritis.

A new treatment class for psoriatic arthritis, Janus kinase (JAK) inhibitors, has also been approved for use, with research ongoing in psoriasis. JAK inhibitors are mostly taken orally as tablets and work by blocking the messaging pathway, calming down the immune system and easing the symptoms.

With these exciting advances, research is now underway to make it possible to predict which biologic will work best for different individuals, thereby improving on the current “trial and error” approach to finding an effective treatment.

Source: The Psoriasis Association

Psoteen is your sister website for teenagers and young people with psoriasis. To which extent is psoriasis different in this group?

Guttate psoriasis is particularly common in teenagers and young adults. This presents as a widespread rash of small spots that appear mainly across the torso, back, limbs and sometimes neck, head and scalp. Guttate psoriasis often begins after a throat infection and usually clears after several weeks or months.

The most common form of psoriasis, plaque psoriasis, has two distinct points of onset, often between the ages of 16–22 years and 55–60 years. It is vital that young people have relevant information and support at a time when they are often experiencing a number of changes and challenges alongside psoriasis (for instance exams, relationships, and moving out of home).

Psoriasis of any kind impacts day-to-day life. The visible nature of psoriasis can be particularly tough to deal with and can lead to feelings of shame and embarrassment, low self-esteem and social isolation.

 

Psoriasis Awareness Week 2021 ran from Friday 29th October to Thursday 4th November, with a theme focusing on lifestyle factors. What were your plans for this year’s awareness week?

This Psoriasis Awareness Week we held two Facebook Live sessions with experts in nutrition and exercise. The first examined the evidence for nutrition in psoriasis. The second focused on the benefits of exercise for psoriasis and psoriatic arthritis.

We also collaborated with St John’s Derm Academy in London to hold an online webinar. This event included updates on two major psoriasis research projects – The PsoProtectMe psoriasis and COVID-19 registry and the Biomarkers and Stratification To Optimise outcomes in Psoriasis (BSTOP) study which aims to identify biomarkers that will enable doctors to give the right psoriasis medicine to the right patient at the right time.

Finally, Psoriasis Awareness Week also sees the launch of our fundraising challenge – the #PsoActive29. Its aim is for participants to raise vital funds and awareness whilst improving their own health and wellbeing by taking on an active challenge.

More information about Psoriasis Awareness Week and the #PsoActive29 can be found on our website.

 

Many thanks for your time and for the interview.

How Will The Menopause Transition Affect Me?

This is the third part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article shows how the menopause transition will affect you.

The menopause transition affects different women in different ways. There are lots of possible symptoms – you may not have any of them or you may have some or all of them, some or all of the time. Use the following table to keep a track of your symptoms. The most common symptoms are listed at the top of the table.

These are largely considered to be short-term symptoms – although some women continue to experience some of these symptoms for many years.

Note that poor sleep in a previously good sleeper is a common but subtle early sign of the menopause transition.

A national survey conducted on behalf of the British Menopause Society (BMS) found that one-half of women go through the menopause without consulting a healthcare professional – even though 42% said that symptoms were worse than expected. Half the women said that the menopause had affected their home life, and one-third said it had affected their work life.

 

My menopausal symptoms

 

Q: How do I know if I have started the menopause transition?

If you are aged 40–50, have any of the symptoms listed in the table and your periods are irregular, you are likely to be in the menopause transition.

 

Q: Do I need a blood test?

Most women do not need a blood test. However, if you are younger than 40 and have perimenopausal symptoms, your doctor will recommend that you have two blood tests 6 weeks apart to measure the levels of FSH. High levels of follicle-stimulating hormone (FSH) may indicate premature ovarian insufficiency, which should be treated with hormone replacement therapy (HRT).

 

Q: I’ve had a hysterectomy. How will the menopause affect me?

Perimenopausal symptoms are caused by changes in the hormones released from the ovaries. If you have had a hysterectomy (removal of the womb) but still have your ovaries, you may get perimenopausal symptoms (except heavy bleeding). However, the symptoms may start earlier than in women who still have a womb.

Women who start taking HRT after a hysterectomy and possibly after an oophorectomy (removal of the ovaries) can continue taking it to age 60 (and beyond if needed) to control menopausal symptoms.

 

Q: I take the combined contraceptive pill. How will the menopause affect me?

Every woman will reach the menopause. However, if you are taking a combined hormonal contraceptive, the perimenopausal symptoms may be masked and you may not know exactly when you reach the menopause.

For women under 50, combined hormonal contraception (pills, patches and vaginal rings) can help control perimenopausal symptoms (including heavy periods).

You can take combined oral contraception (“the pill”) until age 50. You will then need to change to a progestogen-only contraceptive method until age 55.

The Mirena intrauterine system (IUS) can be combined with oestrogen-only HRT to help with perimenopausal symptoms in addition to providing contraception.

 

Q: I don’t have periods because I have a progestogen-based IUS. How will the menopause affect me?

Perimenopausal symptoms are caused by changes in the levels of hormones released from the ovaries, so although you have an IUS you may still have perimenopausal symptoms (except heavy bleeding).

The Mirena IUS can be used as part of HRT to protect the lining of the womb (it provides the progestogen component). It is usually replaced every 5 years.

 

Please check out the other posts of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

Menopause: Other Reasons than Natural Ageing

This is the second part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article deals with other reasons for the menopause, such as surgical menopause, endometriosis, premature ovarian insufficiency, and chronic diseases.

Some women will experience menopause for reasons other than natural ageing. These include premature ovarian insufficiency or a chronic health condition that causes early menopause, or removal of their ovaries to reduce their risk of certain cancers or to alleviate pain associated with endometriosis.

Surgical Menopause

Women who have their ovaries removed as part of a subtotal or radical hysterectomy (removal of the womb and some associated tissues) can experience an abrupt onset of menopausal symptoms. Your healthcare professional should discuss ways to manage these symptoms before you have surgery and put in place an individualised treatment plan, guided by your medical history.

Most women can start hormone replacement therapy (HRT) immediately after surgery. This is best delivered through the skin to prevent any increase in the risk of blood clots in the legs or lungs. Oestrogen-only HRT is most common, but you may also need a progestogen for the first 12 months or longer if you have endometriosis or if your cervix was not removed as part of your surgery.

Ovaries that are not removed during a hysterectomy often fail early. You can consider using HRT as soon as you experience symptoms.

If you are over 45 years of age when your ovaries stop producing hormones reliably, you will not need a blood test and you can start HRT without delay after consulting your healthcare professional. Again, if you have endometriosis or you still have your cervix, you may also need a progestogen.

Endometriosis

Endometriosis arises when tissue that is similar to the tissue that lines the womb (endometrium) grows in other places in the body.

Common sites include:

  • the ovaries, resulting in “chocolate” cysts
  • the Fallopian tubes, where it can cause fertility problems
  • the lining of the abdominal cavity (this is called the peritoneum; it covers, supports and protects the organs inside the abdomen and pelvis)
  • the muscle of the womb (in this location the condition is known as adenomyosis).

Less common sites include the belly button (which will bleed monthly), nose (monthly nose bleeds), lungs (monthly coughing of blood) and caesarean section scars (monthly pain).

Laparoscopy (keyhole surgery) is used to diagnose endometriosis. A small telescope is inserted into the abdomen via small incisions to look inside the body. The condition can be treated medically (often with hormones) or the deposits of endometriosis can be removed and/or scar tissue (adhesions) released during laparoscopy.

It is important that your healthcare professional considers your history of endometriosis when discussing your menopause management. If you have had surgical treatment, there may still be deposits of tissue in your body and you will need a progestogen to reduce the risk of hyperplasia (excess thickening of the tissue, which is a risk factor for cancer).

You may be eligible for a Mirena IUS (intrauterine system) if you have an intact uterus (that is, you have not had a hysterectomy). The progestogen released by the IUS will stop the endometrial tissue from thickening, no matter where in the body it is growing.

There are no clear guidelines on how long you will need a progestogen. Many clinicians recommend long-term use to reduce risk.

Premature Ovarian Insufficiency

Premature ovarian insufficiency (sometimes referred to as POI) occurs when the ovaries fail early (or are surgically removed) in women under the age of 40. There is usually no recognisable cause and it is particularly devastating in younger women who have not yet had children.

Women with POI are at increased risk of osteoporosis and cardiovascular disease (CVD).

Following an individualised risk assessment, you may be offered either combined hormonal contraception – pill, patch or vaginal ring – or HRT.

Fertility treatment using a donor egg is an option for women who wish to become pregnant.

Chronic Diseases

The menopause sometimes starts early in women with long-term (chronic) diseases, such as kidney failure, underactive thyroid, rheumatoid arthritis, epilepsy and migraine. Blood tests are recommended in women below the age of 40 (follicle-stimulating hormone (FSH) should be checked on two separate occasions, 2–6 weeks apart). HRT is not completely off limits to women with underlying health issues, but it is best delivered through the skin as a patch, gel or spray rather than taken orally.

Women with asthma may notice a change in symptom control around the menopause transition. HRT can also affect symptom control: sometimes it helps, but sometimes control deteriorates. It is important that you discuss any problems with your healthcare professional.

 

Please check out the other post of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

What Is the Menopause?

This is the first part of our series about the menopause based on our booklet “Fast Facts for Patients: Menopause”, which is freely available online. This article focuses on what the menopause is and what is happening to the hormones during this transition.

First, the Facts …

  • The menopause is your last menstrual period. It marks the end of your reproductive years and the start of a new phase of life.
  • Many women experience symptoms as they near the menopause – this time of life is known as the perimenopause or menopause transition.
  • The average age at which women start the menopause transition is 46 years. Periods usually stop by the age of 51.
  • The most common symptoms are heavy bleeding, hot flushes, night sweats, emotional instability, vaginal dryness and bladder problems. Symptoms can range from mild to debilitating.
  • Much can be done to help with symptoms during the menopause transition, including lifestyle changes, hormone replacement therapy (HRT) and treatments for individual symptoms.
  • For women under 60 years of age who are in good health, the benefits of HRT far outweigh any risks.

What is the menopause?

The menopause is specifically your last menstrual period. However, the word menopause is widely used to describe the time around this event when many women experience symptoms. This is more accurately known as the perimenopause. It can be thought of as the menopause transition (gradual change) from the reproductive years to the postmenopausal years.

During the menopause transition, the amount of oestrogen produced by the ovaries changes. Instead of having a regular menstrual cycle, it becomes unpredictable. The changing levels of oestrogen cause symptoms, such as heavy bleeding, hot flushes, night sweats, emotional instability, vaginal dryness and bladder problems.

Terminology Tip

Perimenopausal means the time around the menopause (“peri” means “around”). This period of menopause transition is the gradual change as your periods stop through to 12 months after your last period.

Postmenopausal means the time from 12 months after your last period (“post” means “after”).

What Is Happening with My Hormones?

During Your Reproductive Years

The menstrual cycle is a complex process, regulated by hormones.

When you are born, your ovaries contain lots of eggs (ova). From puberty, most of the time an egg matures each month and is released. This process is controlled by two hormones that are released by the pituitary gland – follicle-stimulating hormone (FSH) and luteinising hormone (LH). FSH and LH also stimulate the ovaries to produce the hormones oestrogen and progesterone.

The menstrual cycle

If the egg is not fertilised, levels of progesterone and oestrogen decrease and the lining of the womb is shed – this is your period.

The Menopause Transition

As you get older, your ovaries may not release an egg in every cycle. As a result, levels of both oestrogen and progesterone vary unpredictably.

The menopause transition

These unpredictable hormone levels cause the symptoms of the menopause transition. During this time, the lining of the womb may become too thick and is shed in a disordered way, resulting in irregular, heavy periods.

After the Menopause

After the menopause, oestrogen levels are very low and women generally experience fewer symptoms – although some women continue to have symptoms such as hot flushes.

Most importantly, the falling level of oestrogen increases the risk of cardiovascular disease (CVD) and osteoporosis. Lack of oestrogen also affects the condition of the vaginal and bladder tissues.

These are important issues to consider, regardless of your symptoms during the menopause transition, because you could live for 30 years in the postmenopausal period.

 

Understand the menopause transition and how it may affect you with this handy information sheet. Share it with friends and family, and use it to discuss your symptoms with your doctor.

 

Please check out the other post of our series here:

 

Information based on Fast Facts for Patients: Menopause (Karger, 2021).

Understanding Menopause: An Interview with Dr. Paula Briggs

On the occasion of World Menopause Day 2021 (October 18), we turned to renowned expert Dr. Paula Briggs, who is a consultant in Sexual and Reproductive Health based at Liverpool Women’s NHS Foundation Trust. She is devoted to delivery of women’s health care, research and education. Her main interest is menopause management with a particular interest in urogenital atrophy. She has written various resources on this topic, including “Fast Facts for Patients: Menopause” and numerous articles for the website “Embarrassing Problems”.

 

Paula, first of all, when and why did you develop an interest in women’s health, especially in menopause and hormone replacement therapy (HRT)?

 It wasn’t really a conscious decision. I originally worked as a general practitioner and I saw lots of female patients, I think because they naturally wanted to see a female general practitioner. Initially I provided mainly contraception, and it’s kind of logical to move into menopause management, as that is also clearly to do with hormones and with hormone deficiency. I’ve had an interesting career in menopause management. I’ve seen things go through peaks and troughs and I have never really seen that happen with any other specialty.

So, in 1993, we were giving most women HRT for a variety of reasons. And then of course in 2002 we had the Women’s Health Initiative published and that was very damaging. Women came off HRT, general practitioners stopped prescribing it, and it took a long time for things to recover. And then in 2015 we had the publication of the National Institute for Health and Care Excellence (NICE) guideline that was very clear and very positive. At that point we started to provide individualized care, ensuring that women were listened to, which hadn’t happened for a long time, and they were prescribed HRT if that was the right thing for them.

“In a way it is great that there has been a lot of publicity about menopause.”

In a way it is great that there has been a lot of publicity about menopause. But HRT is not a cure all, and I think those consultations with menopausal women are an opportunity for them to take stock, to look at how they are managing their life in general, what they are eating and what they are doing. It is often a time when women’s children have left home and they might be left together with their husband, which hasn’t happened for a long time. So, it’s a time for them to focus on their own relationships.

There is no reason why older women shouldn’t have sex and that’s partly why I developed an interest in urogenital atrophy because if you ask women about symptoms such as vaginal dryness, itching or burning pain during sex, many of them will actually say “Yes, that is a problem”. However, without the support and being asked, they are very reluctant to ask for help and they assume that that’s a natural part of aging, which it doesn’t have to be.

 

Until quite recently, menopause and HRT were the “Dark Lord” of women’s health, or the “You Know Who” topic not openly discussed. So, how did this change?

I think, certainly in the UK, there has been a lot of celebrity interest, media interest, social media interest and a lot of traffic, which has pros and cons. I deal with many women who have experienced hormonally dependent cancers, and these are relatively young woman who are not always excluded from HRT, but in many cases are either unable to take HRT or reluctant to do so for obvious reasons.

So I kind of feel that it is better really to perhaps take a little bit of a step back at this point to ensure that women are not using excessive amounts of hormones to fix everything that might be wrong because that’s never going to work. Moreover, we should also focus on women who can’t have HRT and think about alternative methods of managing menopause. There are many new things coming to market; new non-hormonal drugs to manage hot flushes, night sweats, and difficulty sleeping, and also non-hormonal treatments for urogenital atrophy, such as laser therapy.

“There are many new things coming to market.”

Irregular periods, hot flushes, sleeping disorders – these are the symptoms most commonly associated with menopause. What other, lesser-known symptoms should be considered by women and their doctors?

I think that mood disturbances are less well-recognized. Anxiety, loss of confidence, brain fog, loss of libido, generalized aching, just feeling “old” are symptoms often experienced by women. Now, there will be an element of symptoms such as these as women age and their body is deteriorating a little bit. However, I think that hormones do play an important part in muscle mass and in tissue quality. I genuinely believe that patients will associate hot flushes, night sweats, menstrual disturbances, and difficulty sleeping with menopause. But if they suddenly become extremely anxious, unable to cope, and unable to function in the workplace, then they are less likely to associate that with menopause. What I have just described really are short-term symptoms, although they can last many years.

Intermediate consequences of hormone deficiency include urogenital atrophy, which doesn’t just affect the vagina; it affects the bladder and it can lead to recurrent urinary tract infections. And then we have the longer-term consequences associated with hormone deficiency: a reduction in bone mass – women will lose approximately 1% of their bone mass per year when they are estrogen deficient as a result of the menopause, and they will also have an increase in cardiovascular risk.

“I think that hormones do play an important part in muscle mass and in tissue quality.”

But it’s not just about focusing on hormones. I think that a menopause consultation is an opportunity to check blood pressure. We know that 50% of women roughly have high blood pressure by the age of 50. And if we treat that then we reduce their overall cardiovascular risk. And if we talk about general risk reduction, for example if the patient is overweight, to support her to lose weight will reduce her risk of becoming a type 2 diabetic with all the consequences that come with that. So I really do think this is a time in a woman’s life when we can make a huge difference with the right information delivered to the patient.

Thus, the correct information is crucial and I think the social media input is helpful in a way because it raises the profile of menopause, but it is very difficult to know what information women are accessing. Therefore, I think that the Fast Facts booklet for women is an extremely valuable resource because it is evidence-based. We just updated it and, from my point of view, I know that when I provide my patients with that resource that they are then provided with the right information.

 

So, you mentioned quite a bunch of symptoms. Can you tell us a bit more about urogenital atrophy?

Yes, so about 80% of women, roughly, will suffer the consequences of a lack of estrogen on tissue quality in the vagina, but also the vulva, which is the outside, the bladder, and also the urethra. In a healthy vagina, which has adequate estrogenization of the tissue, the superficial layer of cells is thick. It sheds roughly every four hours, and those cells are full of glycogen, which supports lactobacilli, the healthy vaginal bacteria.

“About 80% of women, roughly, will suffer the consequences of a lack of estrogen on tissue quality in the vagina, the vulva, the bladder, and the urethra.”

So we all have lots of different organisms in our vaginas, but if the patient has a lack of estrogen, and that means that the superficial cells are reduced and there is less glycogen, then there are less healthy bacteria and the other bacteria start to overgrow, such as Escherichia coli. In this condition the urethra becomes much more prominent. It is short in women anyway, and the natural course for these non-healthy bacteria is to ascend the urethra into the bladder and cause recurrent urinary tract infections which can be very debilitating and can lead to treatment with long-term antibiotics and difficulty functioning in the workplace. I think, though, that we have a workforce that is made up of a huge number of women who may be affected by lack of estrogen.

In addition, we see women experiencing vaginal dryness, itching, burning, and with the folds in the vagina lost, the capacity to stretch is reduced. It becomes shorter, you can get loss of the small lips, fusion of the lips over the clitoris so sex becomes less pleasurable and ultimately, for some women, completely impossible. Providing women with the information at the outset enables them to have treatment earlier on, and that reduces the risk of these potentially irreversible changes in tissue quality.

 

What are the current developments regarding information, treatment and support for menopausal women?

I think there are lots of resources available for women. I think it’s important that women access the right resource to inform them about the best way of managing their menopause, and I think that that’s much better provided early on. This is a journey women are going to spend approximately a third of their lives post-menopause. So we have reproductive life, and we have the menopause transition when their hormones are all over the place, relatively speaking. And then post-menopause when hormone levels are low.

I am chairman elect for the British Menopause Society. We have a patient-facing arm, Women’s Health Concern, and we have lots of valuable resources for patients there. I worked with Karger on Fast Facts, and that resource was recently updated which I think is important, and the feedback from patients has been very positive. So this is education for patients and education for providers of menopause care, which will largely be general practitioners. And I feel that women are entitled to good quality menopause care as part of the National Health Service (NHS).

“Women are going to spend approximately a third of their lives post-menopause.”

Ideally, this would be provided by general practitioners. Only those more “complicated” women that I touched on before, the women who have had cancer or also women who have premature ovarian insufficiency previously known as premature menopause – I think those particular patients are best managed as part of a multidisciplinary team. In my opinion, one of the most important aspects of menopause care is collaboration. So we collaborate with hematologists in regard to venous thromboembolism, blood clots in the leg and the lung, and I work very closely with the gynecologists and with the breast cancer teams. I think that is important so that every decision that is made about care is informed and is not taken without a discussion and considerable thought.

 

Very good, so there is a lot going on for women in menopause. There are so many important topics we would love to talk about with you, but for now we just thank you for answering all the questions on menopause. Thank you very much, Paula.

Inflammatory Bowel Disease: How Will Your Condition Be Monitored?

This is the fourth part of our mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Inflammatory Bowel Disease”.

Monitoring

The most important part of monitoring is simply meeting your doctor regularly.

Blood Tests

You will have regular blood tests to:

  • check your general health
  • detect complications of IBD such as malnutrition, or low levels of iron or vitamins
  • check for inflammation in the body by measuring the amount of C-reactive protein (CRP) – an inflammatory marker in the blood
  • detect the side effects of drugs (occasionally)
  • check the blood levels of some drugs (some patients).

Stool Sample Test

The levels of calprotectin, a protein made by white blood cells that is an indirect measure of bowel inflammation, can be measured from a small stool sample. This is a gut-specific test that is now frequently carried out in the clinic and at home.

Colonoscopy

Colonoscopy is the most important test. It is used to diagnose and assess your IBD, and also to monitor for early tell-tale signs of colon cancer.

A similar test for the upper gut is called gastroscopy or endoscopy and may be required for patients with Crohn’s disease in the esophagus, stomach or duodenum (the first part of the small intestine).

Colonoscopy

Before colonoscopy you will need to follow specific instructions for cleaning out the bowel so that the camera at the end of the colonoscope will be able to give clear images of the bowel wall.

How is the test done? You will be sedated and asked to lie on your side. A flexible tube about the diameter of a finger is inserted through the anus into the rectum and around the colon. Samples (biopsies) of the lining can be taken through the tube for examination.

Imaging Tests

Your doctor may occasionally request a computerized tomography (CT) or magnetic resonance imaging (MRI) scan to assess the extent of your disease and to check for complications of Crohn’s disease such as fistula formation and abscesses.

CT scans are X-rays taken in sequence to build up a picture of the whole area, rather like slices through a loaf of bread. You may be asked to have a special drink of “dye” before your scan.

MRI uses a magnetic field to scan the abdomen and build up an image. There are no X-rays involved in this procedure.

Having a CT or, particularly, an MRI scan can be claustrophobic and noisy, but it is not at all painful. The hospital will let you know if you need to make any preparations before the scan.

Computerized tomography / Magnetic resonance imaging

Bone Densitometry

This is a type of scan to check on the health of your bones. It involves clinically insignificant amounts of radiation.

Osteoporosis (thin bones) can occur if inflammation anywhere in the body is poorly controlled and this is often aggravated by the long-term use of systemic/oral corticosteroids.

 

Bone densitometry

 

Please check out the other posts of our mini-series here:

 

Information based on Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease (Karger, 2019).

Lupus Awareness Month 2021: An Interview with Mandy McCartney (Specialist Lupus Nurse)

Lupus Awareness Month takes place during October in the UK every year. We spoke with Mandy McCartney, a Specialist Lupus Nurse based in Leicester, about the autoimmune disorder, modes of treatment, and her tasks as a Specialist Lupus Nurse.

 

What is lupus and what are its triggers?

Lupus is a disease that occurs when your body’s immune system attacks your own healthy tissues and organs (autoimmune disease). Lupus can cause inflammation that can affect any of the body’s systems including joints, kidneys, skin, heart and lungs. Lupus can affect just the skin, and this is called discoid lupus erythematosus and subacute cutaneous lupus erythematosus. And it can also effect just the kidneys, and this is called lupus nephritis.

There are studies to suggest that lupus is a hereditary condition; however, there are other triggers such as certain medications, infections and photosensitivity (sunlight).

There are other risk factors such as:

  • Age (lupus can affect all ages but most are diagnosed between the ages of 15–50),
  • Sex (lupus is more common in women).
  • Race (Asians, African-American and Hispanics are more likely to be affected).
Most common symptoms of systemic lupus erythematosus (source: Mikael Häggström, used with permission)

Most common symptoms of systemic lupus erythematosus (source: Mikael Häggström, used with permission)

Why it is still very poorly understood both by the public and by many within the medical profession?

Lupus is a very complex disease, and as a lot of the symptoms can mimic other conditions, there are no two lupus cases that are alike and symptoms can change over time. There are periods in a person’s disease where it can be not so noticeable and times when they flare up and it becomes more severe.

For a diagnosis of lupus to be made, the person needs to have 4 or more of the 11 classification criteria which include a combination of symptoms and blood tests.

What is the main mode of treatment for lupus, and which recent advances are there to be mentioned?

We now have a lot of research going into lupus, and we have a number of very successful medications at our disposal that suppress the immune system. We have access to a new biologic agent call belimumab which is the first licensed medication for lupus in 56 years and is used for our cohort of patients with high disease activity alongside rituximab and cyclophosphamide that are highly effective.

We have corticosteroids that can be used short-term to reduce inflammation caused by a flare in the lupus.

Hydroxychloroquine was initially used as an antimalarial; this is a very effective medication that can be used on its own or in conjunction with our other immunosuppressants.

Holistic care for Systemic Lupus in 2021 (source: Prof. Laurent Arnaud, used with permission)

Holistic care for Systemic Lupus in 2021 (source: Prof. Laurent Arnaud, used with permission)

You are one of a very few Lupus Specialist Nurses: How does one become a Lupus Specialist Nurse, and what does a normal working day look like?

I am the first Lupus Specialist Nurse here in Leicester, and I also look after the vasculitis and mixed connective tissue disease patients. I was approached for the role when I worked in research as I had some studies that recruited lupus patients and so had built up some knowledge around the complexities of the disease.

I have been in my role for 6 years now. I work very closely with three consultants, and we have established a connective tissue diseases clinic. We also have clinics that incorporate other specialist consultants including kidney, respiratory, skin and blood.

I operate a helpline that patients can ring when they would like advice, guidance and help surrounding their disease. I have clinics in which I can manage flares of the patient’s disease, changes to medication and lifestyle advice. There is an annual review clinic in which we monitor things such as a person’s cardiovascular risk, body mass index and lifestyle modifications.

A patient will have blood tests outside their clinic appointments for monitoring of their lupus. If a patient is flaring, then this needs to be actioned in a timely manner as a flare can be potentially life threatening.

Being a Lupus Specialist Nurse, to which extent do you work with patient associations, charities and other organizations?

My role was initially funded by Lupus UK so I have always worked very closely with them and have been guest speaker at their patient information days.

Here at Leicester we organize a patient information day annually for lupus awareness month, which includes a number of different specialist talks on a wide range of topics that can affect our lupus demographic such as mental health, diet, skin care and bone health, to name a few.

There is a local support group for our lupus patients that I liaise with that can help support those with new a diagnosis of lupus or those struggling with the disease.

Many thanks for your insights!

Childhood Cancer Awareness Month 2021: An Interview with Phil Brace (CEO The Little Princess Trust)

For this year’s Childhood Cancer Awareness Month, we spoke with Phil Brace, CEO of The Little Princess Trust. The UK-based charity provides real hair wigs free of charge for children and young people who have lost their own hair through cancer.

 

Why do you prefer real hair for children’s wigs to artificial hair?

When many children and young people are told they have cancer, often one of the first questions they ask is: “Will I lose my hair?”

This is because of the way our hair so closely defines who we are, and its loss can seriously affect someone’s confidence and identity.

Our wigs are made from real hair and are hand knotted to give a natural look which alleviates concerns that some children may feel from wearing a wig.

Real hair wigs can also closely resemble a young person’s hair before treatment – something many children want to replicate when choosing the fit, style and look of a wig.

What is the difference/difficulty with children’s wigs compared to adults’?

The main difference is the size of the wig cap. A child’s head will grow until they reach adulthood and so getting the right size is essential to ensure the wig fits properly and is comfortable for the recipient. Our wig caps come in seven different sizes to ensure we can find the right fit for the child.

Andrew Barton, one of the ambassadors of the charity (source: The Little Princess Trust)

Andrew Barton, one of the ambassadors of the charity (source: The Little Princess Trust)

Do you get enough hair donations or is the supply difficult?

We are very lucky to receive donations from all over the world to ensure we can provide wigs to children and young people. We encourage supporters to make sure they have a minimum of 12 inches of hair to donate. However, as our longest wigs are our most popular, we are always incredibly grateful to those who donate hair in excess of 16 inches.

How is it possible to give the wigs away for free?

As a charity, we do not have any paid fundraisers and so rely on the support from the public to fund our service. Many people ask family and friends to sponsor their haircut – and these donations help to raise the £550 it costs us to make, fit and style each wig.

What else helps children to come to terms with their illness?

We know from speaking to our wig recipients that family and friends can offer a brilliant support network to someone undergoing such a traumatic experience. There are also other charities where young people can speak to peers with similar experiences. But we know that each individual is different and handles things differently.

Several hair donations (source: The Little Princess Trust)

Several hair donations (source: The Little Princess Trust)

You support research into finding better treatments for childhood cancers, e.g., by cooperating with the Children’s Cancer and Leukaemia Group (CCLG). Which areas of research are you currently focused on?

In 2016, thanks to the huge efforts of our fantastic fundraisers and corporate supporters, we were able to start funding pioneering academics and institutions leading the way in researching new and better treatments for all paediatric cancers. An area where there is so much work which desperately needs investment. We have now committed more than £15 million across 80 projects covering a range of childhood cancers.

We are striving to improve patient outcomes through access to new treatments through clinical trials as well as improving existing treatments and are working incredibly hard to identify innovative and impactful ways to improve survival and reduce the effects of treatment. The Little Princess Trust works in partnership with the Children’s Cancer and Leukaemia Group (CCLG) to find the most suitable projects. Some of the areas we are currently focused on include developing innovative new treatments for difficult to treat types of medulloblastoma and trying to further knowledge of the evolution of neuroblastoma to improve treatment.

What have you been planning for Childhood Cancer Awareness Month this year?

For Childhood Cancer Awareness Month we have published news stories on our website which have been promoted on our social media platforms. We have talked about the research projects we fund, why they are so important and how we can only fund them thanks to the amazing support we receive. We have also featured some of the people we have helped on our website and focused on the work we fund.

Kyle Matchett, for example, is a lecturer in Molecular Immunology at Ulster University and has received funding from The Little Princess Trust to see if approved drugs can be repurposed to more effectively treat acute myeloid leukaemia. Kyle has returned the support and, throughout Childhood Cancer Awareness Month, he and his lab team are walking the equivalent distance to Barcelona to raise funds for The Little Princess Trust and raise awareness. We are following their progress on our social pages while talking about their vital work in the lab.

Many thanks for the insights!

Asthma: How You Can Help Yourself

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the eighth and last post of our mini-series about asthma based on our patient booklet “Fast Facts for Patients and their Supporters: Asthma”. Here, we focus on how you can help yourself concerning asthma.

Take Your Inhaled Preventer Medication Correctly at the Right Times

If you struggle to remember to take your preventer, set reminders on your phone. Put your preventer next to your toothbrush and take it before you brush your teeth. You can then brush your teeth and gargle, which will help you avoid thrush).

Put a Written Asthma Action Plan in Place with Your Doctor

  • Know your triggers.
  • Know what medications you are taking and when.
  • Know how to recognize if your asthma is getting worse.
  • Know what to do if you have an attack. See your doctor immediately if your asthma is no longer well controlled. You may need to step up your medication.

Book Regular Asthma Reviews

Have at least one review a year. Take your Action Plan with you and keep it updated. Your doctor may want to change it, for example by lowering your dose if your asthma is well controlled.

Stay Active

Exercise is good for your asthma but make sure you have your asthma well controlled before you start exercising regularly. If your asthma is not well controlled, exercise could worsen symptoms and even induce an attack. Always have your reliever medication with you when you exercise. If you find that exercise worsens your symptoms, take 2–4 puffs 10 minutes before you exercise.

Find an exercise that you enjoy. Regular low-impact exercise (30 minutes, 5 times a week), such as walking at a steady pace, will help maintain a good level of fitness. Regular swimming will improve fitness and help with breathing control. Yoga may also help with breathing control.

Avoid exercising outdoors if pollution or high pollen counts trigger your asthma. If you have severe asthma, talk to your doctor or nurse about how you can build more activity into your day.

Lose Weight

Obesity can cause shortness of breath with or without asthma. It will also make your asthma harder to manage. Losing weight can improve your asthma and make your medications work better. Discuss your weight and your diet with your doctor.

Eat Well

A well-balanced diet that favors natural rather than processed foods is good for general health. High-fiber diets or high levels of omega-3 fatty acids (for example, in fish oils) may be beneficial. Fasting (for example, for religious or health reasons) does not seem to affect asthma symptoms. It may even have an anti-inflammatory effect. More study is needed in these areas.

Sleep Well

Symptoms are often noticeably worse at night, especially in children. It is a sign that your asthma is not well controlled, so talk to your doctor or nurse about it. Keep your reliever by the side of the bed. Prop yourself up on extra pillows if it helps you to breathe.

Be Prepared When Traveling

Find out about likely triggers in the place you are visiting and strategies to avoid them. If you are planning a trip to a non-English-speaking country, learn a few important phrases about your asthma. Make sure you pack all your medications. Also pack backups in a different bag. Talk to your asthma specialist if you are on add-on treatments to ensure your therapy is maintained.

What about Alternative Medicines?

There is no conclusive evidence that acupuncture, ionizers, homeopathic medicines or herbal remedies have any benefit for asthma.

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

Fertility Preservation in Young Cancer Patients: An Interview with Inken Hilgendorf (German Foundation for Young Adults with Cancer)

Fertility preservation is a major issue for young cancer patients undergoing treatment. We spoke with Inken Hilgendorf, MD, about the recent changes in legislation in Germany as well as further challenges for young cancer patients. Dr Hilgendorf is a hematologist and oncologist at the University Hospital Jena, head of the working party AYA-Network of the German Society for Hematology and Oncology, member of the board of trustees of the German Foundation for Young Adults with Cancer, and member of the European Network for Teenagers and Young Adults with Cancer (ENTYAC).

 

Since July 2021, fertility preservation for young cancer patients in Germany gets covered by their medical insurance. Why is this a milestone in post-rehabilitation support?

The previous lack of reimbursement was a very stressful situation for young adults with cancer. Every year, about 16,500 young adults in Germany are faced with the diagnosis of cancer and its treatment. Fortunately, about 80% of these young patients can be cured. In this context, fertility preservation is a crucial component of cancer survivorship care and can enable cured cancer patients to have their own children later in life. Thanks to the initiative and the great commitment of the German Foundation for Young Adults with Cancer, the costs of fertility-preserving measures for cancer patients are now covered by the statutory health insurance. However, the costs of ovarian stimulation medication for girls below 18 years of age are not covered by the medical insurance. This question needs to be resolved urgently.

Cryoconservation, fertility and treatment (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

Cryoconservation, fertility and treatment (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

Please tell us more about the interrelated aspects of fertility, cancer treatment and cryoconservation for young patients.

Most cancer treatments, like chemotherapy, radiotherapy or a combination of both, can damage the germinal tissue (ovaries/testicles) and germ cells (oocytes, sperm), putting adolescents and young adults with cancer at the risk of premature ovarian failure or azoospermia and subsequently of an irreversible loss of fertility. Therefore, fertility preservation should be proposed to young patients undergoing potentially gonadotoxic cancer treatment as early as possible. The different options of preserving fertility are shown in the figure below. The most appropriate option should be chosen depending on the individual characteristics of the patient (e.g., age, sex, diagnosis) and the planned treatment.

Methods of fertility preservation (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

Methods of fertility preservation (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

 What is the status quo of fertility preservation in pre-pubescents? Is there a need to act? What can be done?

Prepubertal patients with cancer are also at risk of infertility. Therefore, the possibility of infertility following cancer treatment should be discussed with the parents/guardians of those children early. In order to preserve the reproductive potential of young girls, ovarian tissue cryopreservation can be performed. If a targeted radiotherapy in the pelvic area is planned, the transposition of the ovaries can be another useful option. In prepubertal boys, testicular tissue cryopreservation can be offered, although this option should be considered investigational.

How are other countries dealing with the issue of fertility preservation for cancer patients?

Overall, 38% of respondents of an online survey conducted by the joint working group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE) reported that their adolescent and young adult patients did not have access to fertility specialists. This figure was 76% in Eastern, 48% in Southern, 28% in Northern and 22% in Western Europe, respectively.

What does the future of fertility preservation and cryoconservation look like?

The field of germinal tissue cryopreservation is advancing quickly and may be a promising way to expand this procedure. However, optimal counselling from healthcare professionals should always be warranted and offered to each young patient undergoing potentially gonadotoxic cancer treatment.

Many thanks for your insights and the interview.

Improving the Quality of Life of Chronic Kidney Disease Patients through Peer Mentoring

What Is the Main Idea?

Outside of the doctor-patient interaction, patients with chronic disease need support to navigate their medical and mental journey with their new life changes. Here, we discuss how peer mentoring can help the patients through the journey. Based on the open access research article “Effect of Peer Mentoring on Quality of Life among CKD Patients: Randomized Controlled Trial” in the journal Kidney Diseases, we address how online mentoring has helped improve the quality of life of chronic kidney disease patients.

What Else Can You Learn?

From this article, one can understand what exactly is peer mentoring and the different forms of peer mentoring. This can help people with chronic diseases decide if it is something they would like to pursue.

Peer Mentoring in Chronic Diseases

Mentoring is the process where less experienced people receive guidance from more experienced individuals to achieve their goals. Mentoring can happen at different levels. In peer mentoring for health conditions, the mentors are people who have or have previously gone through similar health issues. They have both experiential knowledge and are trained regarding the particular disease condition. Having lived through the condition, they bring in the human connection that is required, and the relationship is non-hierarchical, reciprocal, and entirely patient-centric.

How Does Peer Mentoring Help the Quality of Life?

Many diseases, especially chronic diseases, reduce the quality of life drastically. Upon diagnosis or treatment of the disease, patients require to change their daily habits and lifestyle. There could also be pain and other health issues to concurrently deal with. This leads to issues of firstly being able to adhere to the new routine and medical regimen, and secondly, having your social circle understand your new lifestyle. Poor adherence can lead to the health getting worse, and dealing with lifestyle changes can take a mental toll. While doctors prescribe and give information about what must be done, when actually putting it into practice, patients end up having many queries. They also need support emotionally.

When it comes to chronic kidney disease, as written in the earlier article “World Kidney Day: Advocacy for Patient-Centered Wellness”, it is important to empower patients and help them to be able to participate in daily activities to improve their quality of life.

Peer mentoring is one solution that can help with these issues. The patients get support to deal with disease-related issues such as fear of going through certain procedures like dialysis. Peer mentoring also helps with mental support as they can get tips and guidance on how to handle the disease and social situations.

What Are the Different Kinds of Peer Mentoring?

There are many models to peer mentoring, such as described by Heisler:

  1. Group self-management programs – here the group sets their goals and a leader helps in facilitating it. These are usually face-to-face programs.
  2. Peer coaches – this is a one-on-one program where the coaches are given some initial training on the health condition.
  3. Community health workers – they are people who bridge the local social and cultural aspects within the community and the healthcare system. They may or may not be peers for the disease itself but are trained to give necessary support and help guide and connect patients to additional support.
  4. Telephone-based peer support – when distance is an issue, telephone-based mentoring is an alternative. This support can also be an add-on to other programs like group self-management.
  5. Web- and email-based peer program – when distance is again an issue, with modern technology, one can create video-based web programs similar to the face-to-face programs.

New Study Shows Online Peer Mentoring for Chronic Kidney Disease Works Best

For the first time, researchers had a systematic look at how the quality of life improved in chronic kidney disease patients in multiple peer mentoring scenarios. The 3 different interventions that were tried were face-to-face mentoring, online mentoring and a control group. All groups were given access to a textbook on “Patient and Family Partner Program”. In online mentoring, mentors and mentees could communicate through a secure online interactive platform with content developed specifically for the program and requirements of the patients. There were weekly reminders by the mentors for the action plan and more meetings were arranged as required. The quality-of-life questionnaire was used as a way to assess different aspects of their life. The online mentoring showed significantly better improvement in the quality of life in all parameters examined of the patients at 18 months compared to face-to-face mentoring or no external mentoring.

What Does It Mean to a Person with a Chronic Disease?

If a person with chronic disease feels the need for help outside of the doctor-patient interaction, you should check with your hospital, community or even online for these peer mentoring programs. While living with the disease is not necessarily easy, you can take steps to improve your quality of living and self-care by using the available facilities.

Treatment of Severe Asthma

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the seventh post of our mini-series about asthma based on our patient booklet “Fast Facts for Patients and their Supporters: Asthma”. Here, we focus on the treatment possibilities of severe asthma.

If you have severe asthma, you are likely to need a higher dose of your preventer along with another inhaled medication, such as a long-acting reliever. Long-acting relievers will help to keep your airways open, but they do not treat the inflammation, so keep taking your preventer medicine as prescribed.

Other treatments will depend on the type of severe asthma that you have. It may take some time to find the right combination of drugs and doses that work for you.

Add-On Treatments for Asthma

Drug typeAbout the drugs
Montelukast• Reduces inflammation in the airways; tablets, swallowed with water, 1 hour before or 2 hours after food; also in syrup or powder form
• Often used to treat difficult asthma in children
• May cause sleep disturbance and, rarely, sudden depression
Theophylline• Relaxes the airway muscles; tablets or capsules every 12 or 24 hours
• May be given in hospital directly into a vein
• Works well in smokers with difficult asthma
• Drug levels monitored by regular blood tests
• Suitable for children
Long-term steroids (for example, prednisone)• Calm inflamed airways
• High doses, taken as tablets daily
• Near to last resort because of side effects
• Rarely used in children
Antifungal drugs (for example, itraconazole, voriconazole)• Attack fungus in the body
• Taken as tablets or capsules
• Monitored by regular blood tests as they can affect the liver and kidneys
• Not usually used in children
Note: read the leaflet that comes with your medicine. Don’t be daunted by the long list of side effects. You may get some or none of them.

 

Monoclonal antibodies (MABS) are an exciting area of medication development known as biological therapy (or biologics). They are tailormade molecules that prevent inflammation in your airways by blocking the chemicals that cause it.

MABS are used as an add-on therapy for people with severe allergic asthma. MABS are also being tested in other forms of severe asthma.

 

Monoclonal antibodyUsed to treat
Omalizumab (Xolair) Severe allergic asthma
Mepolizumab (Nucala) Eosinophilic asthma
Reslizumab (Cinqair, Cinqaero)Eosinophilic asthma
Benralizumab (Fasenra)Eosinophilic asthma

 

MABS can be very successful at reducing asthma attacks and symptoms. Some patients’ responses to MAB treatment have been so impressive that some specialists are talking about controlling severe asthma to the point of no symptoms at all (remission).

How do MABS work? Different MABS work in different ways, but ultimately they prevent or reduce inflammation.

How are MABS administered? MABS are usually injected under the skin in the upper arm, abdomen or thigh every 2–8 weeks. That may mean frequent hospital or clinic visits, although new preparations that you can inject yourself with are being developed.

Are there any side effects? Like all medicines, MABS have some side effects. But some MABS can be given to children as young as 6 years old. The most common problems are pain, redness, itching, swelling and/or burning around the injection site. These effects do not last for long. Although rare, some people can have a serious allergic reaction (anaphylaxis), so you will be carefully monitored after your injection.

Bronchial Thermoplasty

Bronchial thermoplasty (BT) is a form of surgery using a bronchoscope. It improves quality of life but not lung function. You will be given a sedative or general anesthetic before the procedure. A wire is passed down the bronchoscope and pulses of heat are delivered to the walls of the small airways to reduce the build-up of muscle around the airways.

The procedure is only suitable for adults in centers with specially trained staff. You will have three sessions with at least 3 weeks between each session. Each procedure takes 30–45 minutes, and you may need to be admitted for observation after the procedure.

You will need to take high-dose oral steroids to reduce the inflammation in the airways immediately after BT and sometimes before the procedure. Asthma attacks usually increase in the first 3 months after BT. Make sure you know how to manage your symptoms after the procedure.

 

Bronchial thermoplasty

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

Severe Asthma: What You Need to Know

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the sixth post of our mini-series about asthma based on our patient booklet “Fast Facts for Patients and their Supporters: Asthma”. After a thorough review it may become clear that your asthma is not only difficult to control but what is called severe asthma.

What Is Severe Asthma?

Severe asthma does not respond to the usual treatments, even high-dose inhaled steroids and a second preventer medication. It is sometimes called severe refractory asthma. About 4–8% of people with asthma have severe asthma.

Most people with severe asthma take a high-dose inhaled steroid and a high-dose long-acting reliever as prescribed, yet still have asthma symptoms and frequent asthma attacks.

What Is the Cause of Severe Asthma?

We do not yet know why some people get asthma and some people get severe asthma. It may be that more than one disease is working at the same time to cause a type of airway inflammation that does not respond to steroids. Severe asthma often coexists with gastroesophageal reflux disease (a type of heartburn), rhinitis or sinusitis (types of nasal congestion).

You can develop severe asthma at any age. It may develop slowly or be triggered by, for example, a virus or hormonal changes.

How Is Severe Asthma Diagnosed?

If you are taking treatment for difficult asthma correctly but there is no improvement after about 3 months, you will need further tests to try to find out what is causing the airway inflammation.

You are likely to have blood tests, and a sample of cells may be taken from the mucus in your airways. Your test results will show if there are high levels of white blood cells called eosinophils and neutrophils in your blood or mucus.

Sputum Induction

Sputum induction is a painless way of collecting a sample of sputum (saliva and mucus) from your lungs. You will be asked to inhale a fine mist of salty water through a mask, which will irritate your airways and cause you to cough. The sample is collected in a sterile cup.

Bronchoscopy

Alternatively, a mucus sample can be collected with the use of a thin flexible fiber-optic ‘telescope’ called a bronchoscope.

A tube is passed through the nose, down the windpipe and into the large airways of the lung. Fluid is then injected down the tube and sucked out again to obtain washings of mucus from the lining of the airways.

A local anesthetic will be sprayed into your nose and mouth to prevent discomfort and coughing during the procedure. You must not eat or drink for 4–6 hours afterwards, until the anesthetic has worn off, as there is a risk of choking. This procedure usually takes about an hour. You will not need to stay in hospital for it.

The bronchoscopy can also show if there are other cells or lung diseases present.

Bronchoscopy

Other Tests

A FeNO test combined with a blood test called a full blood count can show if you have a lot of eosinophils in your airways. However, FeNO tests can be tricky to interpret, as inhaled steroids and smoking can interfere with the results.

Different Types of Severe Asthma

Eosinophilic Asthma

Eosinophils are white blood cells that normally help you fight infection. Your lungs can become inflamed if you have a high number of eosinophils (high eosinophil count).

This is called eosinophilic asthma (sometimes called e-asthma). There are treatments for eosinophilic asthma.

Non-Eosinophilic Asthma

Non-eosinophilic asthma may be due to a high number of white blood cells called neutrophils. Neutrophils are very important in battling infections and are common throughout the body, but too many of them in the lungs causes inflammation. Your doctor will check the level of neutrophils in your sputum sample.

It is very difficult to treat an excess of neutrophils without hindering the body’s natural response to dangerous infections.

Allergic Bronchopulmonary Aspergillosis

Allergic bronchopulmonary aspergillosis is a very rare type of severe asthma in which a fungus called Aspergillus causes an allergic-like response in the airways. It may even get lodged in the lungs, causing a persistent form of severe asthma.

Severe Allergic Asthma

Severe allergic asthma is caused by a severe allergic reaction to a trigger.

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

Digital Aging and Mascne in the Time of COVID-19: An Interview with Dermatologist Sarah T. Arron

We spoke with Sarah T. Arron, MD, PhD, a dermatologist in Burlingame, California. For The Waiting Room, she has contributed a post on “How to Fight Skin Cancer: Self-Examination and Prevention”. Furthermore, she has published the booklet “Fast Facts for Patients and their Supporters: Advanced Cutaneous Squamous Cell Carcinoma” with Karger. Both resources are freely available online.

 

Dr Arron, we would like to ask you about „Digital Aging“ and „Mascne“ – two conditions that are connected to the COVID-19 pandemic. With people spending more time in front of a computer screen due to the pandemic, they are increasingly exposed to blue light. Can you tell us how blue light affects the skin?

Blue light can be potentially helpful or potentially harmful to the skin – depending on the setting and dose. The majority of the blue light we receive comes from sunlight, but the increased time spent in front of screens means even more blue light affecting our eyes, sleep cycle, and potentially our skin. In some settings, dermatologists use blue light as a safe and effective therapeutic for skin conditions like acne and sun damage. However, we don’t have as much information on the long-term effects of blue light on aging, and it seems that blue light exposure can increase pigmentation in the skin, which could lead to photoaging or “digital aging”.

What is your advice on “Digital Aging”?

Fortunately, the recent interest in blue light exposure means there is more research coming out on this topic and more testing of cosmetic products to protect against unwanted blue light. Mineral sunscreens such as titanium and zinc already protect us from blue light, so look for one that you can wear every day, and apply even if you plan to be indoors working at your computer. I like EltaMD® UV Clear Broad-Spectrum SPF 46, which doesn’t leave a white film typical of some zinc sunscreens. There is also some evidence that blue light damages the skin by generation of reactive oxygen species, which can be combatted by using topical antioxidants such as a vitamin C serum. The Ordinary Ascorbic Acid 8% + Alpha Arbutin 2% is a cost-effective option. Don’t forget that blue light can also impact your sleep cycle, which impacts your skin. Try to unplug in the evening and get your well-deserved rest.

Since masks have become an everyday object, and wearing them is required for many activities, people more and more complain about red spots on nose, chin and cheeks. Can you tell us how “mascne” develops?

Mascne is a big problem for many people. It is a type of “acne mechanica”, an acne flare due to friction, heat and pressure. We can also see this from sports helmet chinstraps, or on the forehead due to chronic baseball caps. The heat and occlusion from the masks allow bacteria, skin cells, and oil to clog the pores and cause pimples, and the physical rubbing exacerbates that inflammation.

What can be done to avoid and/or treat this condition?

If you are acne-prone, try to establish a good preventive regimen with over-the-counter benzoyl peroxide to target bacteria and reduce inflammation, and salicylic acid to unclog pores. These may dry out the skin, which leave it prone to more irritation from the mask, so don’t forget a gentle moisturizer such as Vanicream™. Try to avoid wearing makeup underneath your mask, as this further clogs the skin. It is also important to consider the mask you are wearing – look for 100% cotton and wash them daily, or use disposable surgical masks. If you find your mask rubs a certain place on your lip or chin, consider swapping for a different style and fit – there are so many to choose from! And if it persists, see your dermatologist who can prescribe stronger treatments as needed.

I’ve also noticed patients with flaring and spreading cold sores (herpes simplex) under their masks. If you are prone to cold sores and feel one coming on, take your antiviral medication or call your dermatologist right away. Consider covering your cold sore with a band-aid to avoid friction from your mask – if the blisters pop open, the mask can spread the viral fluid to other areas on your lips.

Are there other new or unexpected conditions you see in your practice due to the pandemic?

My biggest concern is the patients who have delayed getting their skin checked because of the lockdowns last year. Patients started coming back to the office after the vaccines came out, and I saw a number of new or changing skin lesions that had grown during 2020 and turned out to be skin cancer. The sooner we diagnose and treat, the better the outcome for the patient, so if you have skin concerns, don’t hesitate to come in and get checked!

Dr Arron, we thank you for your insights!

What Are the Tests for Asthma?

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the fifth post of our mini-series about asthma based on our patient booklet “Fast Facts for Patients and their Supporters: Asthma”. Here, we focus on the tests your doctor will run if your symptoms suggest asthma.

Spirometry

Spirometry is a simple non-invasive test that measures how hard and how much you can breathe out (exhale). Sometimes how hard you can breathe in (inhale) is also measured in the same test. It is usually performed before and after you have inhaled reliever medication to see what difference the medication makes.

It is difficult to do spirometry on children under 5 years old. In very young children, it is best performed in a clinic that specializes in testing children.

You may hear your doctor talk about FEV1 or FVC. These are measurements that the doctor makes from your spirometry test.

FEV1 (forced expiratory volume in 1 second) is the maximum amount of air you can blow out in 1 second. People with asthma often (but not always) have a lower-than-normal FEV1. Your FEV1 should increase after a dose of reliever medication.

FVC (forced vital capacity) is the total volume you can blow out after taking the deepest breath possible. People with asthma usually have a normal FVC. If your FVC is lower than normal, you may have a different lung disease.

 

Spirometry

 

Peak Flow

One of the easiest ways to measure the force of blowing is with a peak flow meter. This is a cheap, portable, handheld device that is very easy to use. Peak flow meters are available at pharmacies and online. Peak flow can be used to diagnose asthma and to monitor your asthma after diagnosis.

 

Peak flow meter

 

Peak flow measurements reflect what is happening in your airways. Keep a daily record of your peak flow, morning and night. If your asthma is poorly controlled, your peak flow will be up and down.

 

Peak flow measurement

 

Challenge Testing

The bronchial challenge test (or airway hyperresponsiveness test) assesses how your airways respond to an asthma trigger. It is used only if other tests, including spirometry, do not clearly show that you have asthma. It is not recommended for children.

The test is carried out in hospital by trained staff who are on hand to reassure you if your breathing worsens. You will be asked to inhale an irritating substance (for example, a saltwater mist) through a handheld device or nebulizer. Your response will be monitored and, if necessary, treated.

FeNO Test

FeNO (fraction of expired nitric oxide) is another ‘blowing’ test that measures how much nitric oxide is being produced in your airways. The level of nitric oxide can help show what is causing the inflammation in your airways.

 

FeNO Test

 

FOT

FOT (forced oscillation technique) measures air pressure and flow in your airways. You will be asked to breathe normally in and out through a mouthpiece attached to a machine. FOT can be used on people who are unable to do spirometry, such as very small children, but other tests are usually needed to get a definite asthma diagnosis. Research is under way to see if this test can be used to diagnose asthma in very young children (under 3 years old).

X-Rays and Other Imaging

The features of asthma do not show up well on chest X-rays or other types of chest scans. However, scans do provide a picture of the lungs and can show if something other than asthma is going on, for example heart failure, emphysema or lung infection.

Allergy Testing

Skin prick tests can be carried out to find out if you have an allergy and what you are allergic to.

 

Skin prick testing

 

Drops of liquid containing small amounts of allergens (for example, animal fur, pollens, house dust mites, molds) are placed on your forearm. A small sterilized needle is then pressed into the skin to break the surface.

If an itchy weal appears that is larger than the positive control weal made by histamine, then you are allergic to that substance. The bigger the skin reaction, the more severe the allergy. You may respond to several substances.

It is also possible to test your blood for allergens, but the skin test can test for more allergens in one go.

Could My Breathing Difficulties Be Something Else?

Many illnesses can mimic asthma. Other illnesses that can cause breathing problems include chronic obstructive pulmonary disease, abnormal function of the vocal cords and wheezing after a viral infection. Your doctor will make sure it is asthma that you have and not something else. Talk to your doctor if you have any worries about your asthma diagnosis.

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

Sarcoma Awareness Month 2021: An Interview with Brandi Felser (The Sarcoma Foundation of America)

Sarcomas are a rare type of cancer growing in the connective tissue, i.e., cells connecting or supporting other kinds of tissues in the body. We spoke with CEO Brandi Felser of The Sarcoma Foundation of America (SFA) about the foundation, the everyday challenges that sarcoma patients face and Sarcoma Awareness Month. 

 

First of all, could you please tell us about The Sarcoma Foundation of America (SFA) as such, its aims, and your role within the foundation?

The three pillars of the Sarcoma Foundation of America (SFA) are: research, education and advocacy.

  • Research: SFA is an advocate for increased research to find new and better therapies with which to treat patients with sarcoma. As the leading funder of research in the sarcoma community, the organization raises money to privately fund grants for sarcoma researchers. Since its inception in 2000, the Sarcoma Foundation of America has invested over USD 13 million in research; including over 200 sarcoma research grants, eight American Society of Clinical Oncologists (ASCO) Young Investigator Awards, two Advanced Clinical Research Awards (ASCO) Conquer Cancer Foundation Awards, and two ASCO Conquer Cancer Foundation Career Development Awards.
  • Advocacy: SFA serves as the voice for the sarcoma community by educating legislators, federal and state agency officials, health and research communities, and the general public about the need for additional research and new therapies. SFA advocates for increased research funding for sarcoma both from the public and private sectors and works with government, for-profit and non-profit cancer organizations, and the biopharmaceutical industry to improve the level of awareness, interest, and investment in research for sarcoma.
  • Education: An educated and empowered community is key in efforts to bring change to the sarcoma landscape. Education not only aids patients and caregivers in advocating for their own care, but also helps to build a group of advocates who can work on behalf of others to raise awareness and influence research and drug development activities. SFA’s advocate education and engagement initiatives include thought-provoking in-person education sessions with esteemed speakers, interactive webinars, advocate/researcher networking at national meetings, and briefings on the latest developments in sarcoma research. SFA’s education program is a comprehensive program to provide patients with information and tools needed to be a leader in the sarcoma advocacy community.

The Race to Cure Sarcoma

SFA also hosts the Race to Cure Sarcoma event series, the premier run/walk series in the United States focused on raising awareness and research funds for sarcoma. The Race to Cure Sarcoma is made up of family-friendly run/walks held in cities across the nation. More than USD 1 million each year is raised for sarcoma research through the Race to Cure Sarcoma.

Sarcoma Facts Everyone Should Know (source: The Sarcoma Foundation of America)

Sarcoma Facts Everyone Should Know (source: The Sarcoma Foundation of America)

Why is sarcoma still considered to be the “forgotten cancer”?

Sarcoma has made significant progress over the last several years in terms of more research and therapies. However, sarcoma still suffers from inadequate investments in research funding to advance drug development, limited awareness about the disease, and limited sarcoma centers and specialists. All of these create challenges for sarcoma patients. Moreover, the rarity of the disease makes it difficult to generate research investment and awareness.

What are the everyday challenges that sarcoma patients face?

Treatment options are limited. Once a patient is diagnosed, getting treatment specific to their subtype is challenging. Sarcoma is curable by surgery (approximately 20% of the time), or by surgery with chemotherapy and/or radiation (another 30%), but about 50% of the time they are totally resistant to all of these approaches. For many subtypes, there is no therapy approved by the Food and Drug Administration (FDA). Patients suffer from limited treatment options and limited sarcoma centers to access treatment. The journey to diagnosis can be long, often taking years.

What can you tell us about pediatric sarcoma and the (unmet) needs of the young patients (and their families)?

Although still rare, sarcoma represents 15–20% of pediatric solid tumors with the most common tumor type being rhabdomyosarcoma. Risk factors for pediatric sarcoma include inherited disorders such as Li-Fraumeni syndrome, RB1 gene changes, and Neurofibromatosis type 1 (NF1), and past treatment with radiation therapy. Similar to adult sarcomas, treatment options are limited for pediatric patients. In addition, survivors of pediatric sarcoma face the challenge of lifelong health problems due to the cancer treatments that seriously affect their quality of life. These can include organ, tissue, and body function; growth and development; social and psychological adjustment; and second cancers.

Sarcoma Awareness Month (source: The Sarcoma Foundation of America)

Sarcoma Awareness Month (source: The Sarcoma Foundation of America)

July was Sarcoma Awareness Month: How did you perceive the awareness event, and what can we do after the actual awareness month?

Sarcoma Awareness Month is an important time for the community to come together to honor patients and survivors, remember the loved ones lost, and raise awareness about sarcoma. The sarcoma community wore yellow, engaged in educational activities, and shared stories about patient journeys and our loved ones. Thousands of members of the sarcoma community joined SFA for our National Virtual Race to Cure Sarcoma to help raise much needed funds for sarcoma research. The combined efforts of the sarcoma community were effective in educating the world about sarcoma and no doubt lifted the voice of sarcoma patients and survivors.

Our work to create change for the sarcoma community, however, cannot end there. The month of July, Sarcoma Awareness Month, is a time for the community to join forces, to unite and raise awareness about the disease. Importantly, it is also a time to unite and work toward more and better treatment options for all sarcoma patients.

But not just this month. Every month.

How and to which extent has the COVID-19 pandemic changed your work as well as the lives of sarcoma patients?

How we work as a team, in terms of not being in the office, has changed, but outside of that, mostly our advocacy and public policy focus. The pandemic made all of us re-think how we approach treating patients. Especially in sarcoma, it is important for sarcoma patients to be treated at a sarcoma center, which often means travel to that location. That became nearly impossible during the pandemic. Medical professionals and patients were forced to find ways to care for patients, and receive care, differently. This worked well in many aspects because the sarcoma community is already a very collaborative group. But it did crystalize that some of these changes should continue after the pandemic such as telemedicine, non-priority (scans, blood tests, even chemotherapy) being administered at a more local institution while being supervised by a medical professional who might be far away. We would like to see some of these changes stick. It can tremendously benefit sarcoma patients.

In terms of research funding and education, we are able to have those discussions and sessions via webinar so that actually made things easier for us and helped us to reach more people.

Many thanks for your insights!

World Hepatitis Day 2021: An Interview with Cary James (World Hepatitis Alliance)

For World Hepatitis Day, which takes place on July 28, we spoke with Cary James, CEO of UK-based World Hepatitis Alliance, about the global burden of viral hepatitis, means of prevention and testing, as well as the impact of COVID-19 on hepatitis patients.

 

Please tell us more about the World Hepatitis Alliance, its tasks, and the role of patients within the organization.

The World Hepatitis Alliance (WHA) is a global network of over 300 organisations from 100 countries, dedicated to eliminating viral hepatitis. We represent the people and communities impacted by viral hepatitis. Our global board members all have lived experience of viral hepatitis, and people living with hepatitis are at the heart of everything we do. Without putting the people and communities impacted by hepatitis at the centre of the global hepatitis response, all efforts will fail. Our main mission is to harness the power of people living with viral hepatitis to achieve its elimination.

How big is the global burden of viral hepatitis, being one of the world’s leading causes of death?

More than 320 million people are living with viral hepatitis globally, with 1.1 million deaths caused by hepatitis-related illnesses every year. Two-thirds of all liver cancer deaths worldwide are caused by hepatitis B and C.

If nothing is done to combat hepatitis, by 2040 it will cause more deaths than HIV, TB and malaria combined.

Although the current numbers are daunting, with the vaccine and effective treatments for hepatitis B and the cure for hepatitis C we have all the tools we need to prevent, test and treat hepatitis and achieve the elimination of viral hepatitis within the next decade.

The motto of World Hepatitis Day 2021: "Hepatitis Can't Wait" (source: World Hepatitis Alliance)

The motto of World Hepatitis Day 2021: “Hepatitis Can’t Wait” (source: World Hepatitis Alliance)

What needs to be done to achieve better prevention, testing and treatment or even elimination of hepatitis?

Ambitious targets were set by the World Health Organisation (WHO) in 2016 to see the elimination of hepatitis by 2030, including a 90% reduction in new cases of hepatitis B and C infections by 2030.

However, it won’t simply happen. Concerted efforts are needed to reach elimination and no one must be left behind. We need to raise more awareness of hepatitis and encourage people to come forward for testing. 290 million people are living with viral hepatitis unaware of their diagnosis; we need to find them and link them to care.

Health systems need to look to redevelop and become person-centred, working with and for their communities to make the health system accessible to all those that need it.

Currently only a handful of countries are on track to achieve elimination by 2030. There is a common thread across all of the countries on track. That is a strong civil society presence at all levels of planning and implementation of hepatitis elimination strategies coupled with the political will to act. Collaboration between governments, international organisations and the civil society is key. As well as putting the people affected by viral hepatitis at the heart of the solution.

Global funders also need to join the fight so that low- and middle-income countries can respond to the hepatitis crisis in their countries.

Which impact does/did the COVID-19 pandemic have on the lives of patients with hepatitis?

People living with hepatitis were left unable to access essential medicines during the pandemic; we also saw a drastic fall in testing availability.

We have also seen a drastic impact on the delivery of the hepatitis B birth dose vaccination. Modelling conducted by Imperial College London and WHO warned that, in a worst case scenario, the pandemic could cause an additional 5.3 million hepatitis infections and an additional 1 million hepatitis B related deaths later on.

The COVID-19 crisis has affected the availability of hepatitis services, impacting harm reduction services, testing availability, treatment access and vaccination delivery. Civil society organisations and other frontline hepatitis service providers have also seen their ability to raise awareness and fundraise impacted by the pandemic.

Civil society organisations are a key contributor to national hepatitis elimination programmes in many countries. A reduction in their capacity means there are fewer people being tested, and many people living with hepatitis are unable to access life-saving treatment.

The COVID-19 crisis has revealed many of the weaknesses in health systems around the world. It is our collective responsibility to learn from this crisis and to evolve health systems to better serve us all. Hepatitis elimination must not be left behind.

World Hepatitis Day 2021: "Let's eliminate hepatitis by 2030" (source: World Hepatitis Alliance)

World Hepatitis Day 2021: “Let’s eliminate hepatitis by 2030” (source: World Hepatitis Alliance)

Are those patients more at risk of contracting a COVID-19 infection, and should they therefore get vaccinated or rather not (and why)?

The main global liver medical societies have advised that viral hepatitis is a serious underlying medical condition. People living with it might be at higher risk from severe case of COVID-19. They should speak to their medical provider about getting vaccinated against COVID-19 as soon as vaccination is available to them.

In 2021, the theme of World Hepatitis Day is “Hepatitis Can’t Wait”. Why?

Every 30 seconds, a person loses their life to a hepatitis-related illness. The “Hepatitis Can’t Wait” theme highlights the need to accelerate hepatitis elimination efforts, especially during the COVID-19 pandemic. Alongside this, it also highlights the social injustice and inequity caused by the current lack of action on hepatitis elimination and focused on the action needed to get on track to meet our 2030 elimination goals. This campaign demands urgent action from all stakeholders and the general population to tackle hepatitis.

What has the World Hepatitis Alliance planned or already put to action concerning World Hepatitis Day on July 28?

The World Hepatitis Alliance has developed campaign resources, including posters, social media graphics and videos that people can use to raise awareness locally and on social media. We also have several events planned, including a webinar series and a global virtual relay, which will see the hepatitis community create a chain of video messages following World Hepatitis Day as it travels from New Zealand to Hawaii, showing the global community working to combat hepatitis.

Many thanks for your time and for the insights.

World Sjögren’s Day 2021: An Interview with Linda Stone (Sjögren Europe)

This year, World Sjögren’s Day is on July 23. We spoke with Linda Stone of Sjögren Europe about the challenges of the chronic inflammatory immune disease, the empowerment of Sjögren’s patients, and the organisation’s plans for the awareness event.

Please tell us more about Sjögren Europe and its vision.

Sjögren Europe was formed in 2019 as a federation of properly constituted national Sjögren’s patient organisations.

Six of the seven Board members have Sjögren’s, and we are all active in our own national associations. We are also all active in differing ways in a variety of research projects. Our collective experience covers the range from project team through patient advisory group to patient subject. The members of the Board and the Medical Board are all volunteers. Funding comes solely from modest member fees plus donations and discretionary grants from Pharma industry.

Sjögren Europe’s purpose is “to increase visibility, attention and solutions for Sjögren’s Syndrome by promoting the advancement of knowledge, research, information, treatment and care, by fostering patient involvement and participation in scientific research, medical, health, political institutions, pharmaceutical industry and social areas, and by increasing awareness about Sjögren’s Syndrome at all levels.”

The ideal is for Sjögren Europe to be accepted at the table whenever and wherever within Europe Sjögren’s is being considered.

What exactly is Sjögren’s, and is there maybe an overlap with other diseases?

 Sjögren’s is a chronic inflammatory immune disease which presents in diverse ways. The common recognised symptoms are dryness (especially eyes and mouth) and fatigue (approximately 70%), but this is too simplistic. Sjögren’s can develop to impact one or more of several major organ systems, for example, lungs, gastrointestinal system, bladder and peripheral nerves. Research is ongoing to see if phenotyping sufferers predicts the likelihood of developing such serious effects in the future. The different phenotypes may indicate the probability of response to therapy.

Currently, there is no agreement amongst patient groups about overlap syndromes. Is it a result of Sjögren’s or a separate disease? Similarly, there are a number of differing opinions within the relevant medical professionals.

World Sjögren's Day infographic (source: Sjögren Europe; iceberg designed by Freeepik)

World Sjögren’s Day infographic (source: Sjögren Europe; iceberg designed by Freeepik)

What are the challenges of Sjögren’s, for example regarding diagnosis and treatment?

 Receiving a diagnosis is challenging. The heterogeneous nature of Sjögren’s seriously complicates diagnosis, frequently leading to misdiagnosis and or significant delays in receiving appropriate care. There are not enough rheumatologists with an interest in, and knowledge of Sjögren’s to ensure that every patient receives the best care. Access to medication is variable from country to country as is access to additional care such as dentistry (lack of saliva results in vulnerability to tooth decay), ophthalmology (poor tear film leads to corneal damage), hydroxychloroquine monitoring, physiotherapy, etc.

Treatment is mainly symptomatic – eye drops, emollients, secretagogues, etc. Currently, there are no treatments to halt disease progression let alone reverse it or cure the sufferer. Research into potential new treatments is problematic. The heterogeneous presentation has caused difficulties in identifying trial outcomes that are measurable, reproducible and meaningful for both researcher and patient. Projects are still endeavouring to produce a useful set of Patient-Reported Outcomes (PROs) which will aid research into treatments to alleviate Sjögren’s.

What is important for empowering the patients to have the utmost quality of life possible?

Living with Sjögren’s is difficult, protecting dry eyes and mouth, moisturising dry skin, and coping with enveloping fatigue. Life is exhausting, and this is before even taking into account its long-term effects on the body together with the various diseases of age and the continual battle for access to appropriate care and treatment. Patient support groups play a significant role in guiding patients and empowering them to manage their disease and have the best possible quality of life.

The overall impact on family and personal life is immense. Socialising is limited by fatigue and difficulty coping with smoke and air conditioning. Photophobia is commonplace. Keeping sufficiently hydrated can be difficult but adequate fluid is essential to ensure that medication and food can be comfortably swallowed.

The variation in presentation and difficulty in achieving a diagnosis create a further challenge. Sjögren’s is not recognised by welfare authorities as a disease meriting disability benefit. This lack of recognition results in financial hardship for some severely affected sufferers at a time when they are most in need of help.

First General Assembly of Sjögren Europe in Madrid during the EULAR congress in June 2019 (source: Sjögren Europe)

First General Assembly of Sjögren Europe in Madrid during the EULAR congress in June 2019 (source: Sjögren Europe)

Why can’t Sjögren’s be regarded as a rare disease as such?

Sjögren’s is considered to be a rare disease by some, and not so by others. As knowledge of the prevalence and incidence varies from country to country, and estimates vary even more, it is difficult to be definite. What is agreed is the variation in presentation which could influence the view of clinicians.

What does Sjögren Europe plan for World Sjögren’s Day on July 23 to raise further awareness of the syndrome?

World Sjögren’s Day on 23 July is a wonderful opportunity to promote understanding of this devastating disease and help sufferers. This year, Sjögren Europe launched its campaign on 14 June with a webinar on fatigue. This has been followed up by a series of posts on social media. These posts are based on “15 Types of Fatigue” by Teri Rumpf PhD. The campaign will culminate on 23 July with the publication of a booklet, authored by Prof Rinie Geenen, offering advice and tips on how to manage Sjögren’s fatigue. This will then be augmented by a leaflet summarising Teri Rumpf’s 15 types of fatigue.

Many thanks for the interview and for your insights.

Gastrointestinal Stromal Tumor (GIST) Awareness Day 2021: An Interview with The Life Raft Group

This year, Gastrointestinal Stromal Tumor (GIST) Awareness Day is on July 13. We spoke with Carolyn Tordella of the non-profit organization The Life Raft Group, based in the United States, about the rare cancer GIST, the vision of the group, and its plans for the awareness events.

First of all, please tell us about The Life Raft Group as well as its aims and mission.

The mission of The Life Raft Group is to enhance survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts. The Life Raft Group vision is to champion patient-powered science and drastically increase long-term survivorship for all cancer patients.

To accomplish this, we rely on four key pillars:

  1. Leverage the patient perspective to drive innovative solutions in cancer research
  2. Educate and empower patients to take a larger role in their care
  3. Accelerate research outcomes through collaborative efforts
  4. Increase access to effective treatments worldwide

The Life Raft Group started in 2000, when a handful of patients in the early Gleevec trials began sharing their experiences online. Many patients had been misdiagnosed with leiomyosarcoma and were just now finding out they had an entirely different cancer – gastrointestinal stromal tumor, or GIST. Sharing their stories and experiences online helped them in a variety of ways, including gaining much-needed support while facing a rare disease and managing the side-effects of a new drug. In the next two years, this group formed a newsletter and Web site to share information with an even wider audience, before formally incorporating in June 2002. Over the years, The Life Raft Group has grown immensely, meeting the challenges facing GIST patients and caregivers and the research community every step of the way.

What is particularly demanding about GISTs in adolescents and young adults (AYA)?

Adolescents and young adults can present with rarer subsets of GIST that can be non-responsive to drug treatments that may be used in mutations that occur most often in older adults. Cases in adolescents and young adults comprise less than 15% of all GIST cases per year and can include diagnosis of cancer syndromes such as Carney Stratakis Syndrome and Carney Triad. These cases can be indolent (though there are exceptions), hereditary or somatic, and there are few treatment options beyond surgery, and also not many clinical trials are available for such patients. The greatest challenges may be coping with extensive surgery and the side-effects from those surgeries and the challenges of the lack of treatments and clinical trials.

GIST DO IT Walk in New Jersey, 2019 (source: The Life Raft Group)

GIST DO IT Walk in New Jersey, 2019 (source: The Life Raft Group)

In your opinion, what needs to be changed to pay heed to the unmet needs of patients with GISTs?

Our goal is to establish mutational testing for our patients as a protocol for all GIST patients. Our Biomarker Testing campaign for 2021 is to bring awareness of the importance of mutational (biomarker) testing to patients and oncologists. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. Biomarker testing is an opportunity to improve and optimize treatment – possibly avoiding unnecessary treatments and getting to the right treatment sooner. Currently, biomarker testing rates in the gastrointestinal stromal tumor patient population are relatively poor – only about 26.7% of patients have had testing done. The Life Raft Group Patient Registry, which is a group of extremely proactive patients, notes only about 53% of patients are aware of their mutation.

You can read more info on this important campaign here and here.

What are you planning for GIST Awareness Day on July 13? Why are awareness days and campaigns important?

Despite all the work done by our amazing members and friends to date there is still a huge lack of education and awareness that exists within the medical community and general public about GIST. The ultimate goal of GIST Awareness Day is to bring so much attention to GIST that knowing what it is will no longer be so “rare”. GIST Awareness Day serves as the yearly pinnacle of our education, awareness and advocacy efforts and provides those outside the GIST community a chance to learn about and lend their support to this important cause.

GIST Awareness Day 2021 (GAD) – We have planned a GAD TikTok Challenge, plus we’ve also provided ideas for our members to GIST DO IT all year long.

hashtags: #GISTAwarenessDay #TimeToGetTested #ItsTime

Please let us know more about the GIST Patient Registry, GIST Collaborative Tissue Bank, the GIST Trials Database, and Project Surveillance, as featured on your homepage.

GIST Patient Registry

The GIST Patient Registry is a natural history study that is updated and curated regularly from the date of diagnosis throughout the patient’s lifetime.

The GIST Patient Registry is an ongoing research study where GIST patients and caregivers from all over the world volunteer their information regarding their GIST treatment. This information is used to understand the natural history of GIST, treatment outcomes, and to help accelerate research with our Real World Evidence Data.

Since The Life Raft Group is not limited by the design of traditional clinical trials, we have significantly increased flexibility in the areas that we can examine. Because our GIST Patient Registry is only driven by patient-reported data, we are better at following patients for prolonged periods of time and across institutional boundaries causing a significant impact in reaching and understanding real-life issues that come up daily in the patient’s journey. This strong connection allows us to track traits of the disease that are of concern to the GIST community. The data collected allows us to educate/advocate patients in the decision making and treatment options for their disease.

Perhaps more importantly, by moving beyond the role of patient advocates to become patient scientists, we are changing the medical research environment. We are claiming a voice at the decision making table and influencing what research is being done and how it is being conducted.

GIST Collaborative Tissue Bank

The GIST Collaborative Tissue Bank brings together GIST researchers and GIST patients in a unique partnership. For patients, it’s an opportunity to reach leading researchers with one tissue donation. For researchers, it’s an opportunity to access tissue linked to GIST clinical histories and to share valuable tissue and critical data. This collaboration maximizes the value of donated tissue and research time.

GIST Clinical Trials

A data-driven website to help patients navigate GIST clinical trials. The Life Raft Group and its volunteers have developed GIST Trials, a free, easy-to-use clinical trial database designed to provide patients, caregivers, and members of the public current information about clinical research studies relevant to GIST. It contains information about clinical studies being conducted throughout the United States and in many countries throughout the world.

Project Surveillance

The Project Surveillance Group is a global collaboration of 40+ physicians, clinicians, researchers, surgeons, and other medical professionals who communicate digitally to discuss, brainstorm, and work through difficult issues in GIST treatment. This group aims to close critical time gaps in research and practice, by forming a collaborative platform for GIST experts to share real-world, real-time observations in a timely, actionable manner. Enhanced by the patient-provided data from The Life Raft Group’s Patient Registry, the project combines patient and clinician brainpower.

Many thanks for your time and for the interview.

World Vitiligo Day 2021: An Interview with Yan Valle, CEO of the Vitiligo Research Foundation

This year, World Vitiligo Day was held on June 25. We spoke with Yan Valle, CEO of the Vitiligo Research (VR) Foundation and author of the book “A No-Nonsense Guide To Vitiligo”, about the work of the foundation and the skin disease which causes a gradual loss of skin color on different parts of the body.

 

Please tell us more about the Vitiligo Research (VR) Foundation as well as its inception and goals.

The VR Foundation is non-profit organization, aimed squarely at vitiligo. We educate, we support, we care.

The foundation was born from the determination of one man – Mr. Dmitry Aksenov, philanthropist – to help his daughter, who was diagnosed with vitiligo at an early age. After years of trying and failing to find an effective treatment for his daughter, Dmitry took this challenge personally.

In 2010, Dmitry Aksenov started the Vitiligo Research Foundation to facilitate therapy development for his daughter and millions of other people who suffer from vitiligo. I was invited to lead the company since its early days, and I’m honored to serve as its CEO for over ten years now.

While we are not alone at aiming at vitiligo, I think we are unique in the interdisciplinary approach that we have. The VR Foundation operates as a semi-virtual company, with a small internal staff managing research, clinical and educational programs in several countries. Our team members often wear several hats.

Because we are a donor-supported organization, we do not have the luxury of the behemoth R&D budgets of the Big Pharma. But we have funded an early-stage vitiligo research that laid a solid foundation for many other research projects, and attracted top talent into this obscure field of dermatology.

Perhaps, we are better known for the World Vitiligo Day campaign that we launched in 2011 and continue to coordinate at the international level.

 

Source: Art project “Facemotions” by Stephanie Corne

Source: Art project “Facemotions” by Stephanie Corne

 

What is vitiligo, what are its causes, and how can those affected find help and/or treatment?

Vitiligo is a generally unpredictable, non-contagious, lifelong skin disease that causes a gradual loss of skin color on different parts of the body.

The true causes of vitiligo are still unclear. Over 50 genes are involved in the immune system response and pigment cell production. It is beyond our current ability to understand a complex matrix of numerous genes interactions that result in a vitiligo patch.

We know the cause is pre-wired in the genes, just waiting for a bad luck moment. An obscure triggering event creates stress in the pigment-producing cells of the skin. An over-reactive immune system mistakenly identifies these stressed-out cells as intruders. Specialized cells called “T-cells” neutralize these “enemies”, driving progressive skin depigmentation.

In about the half of all cases, the real cause of vitiligo remains unknown. In the other half, psychological stress is the most frequently reported trigger for vitiligo. Environmental factors, physical skin damage and hormonal changes are often correlated with vitiligo onset. Prolonged contact with certain chemicals may also induce or worsen vitiligo; they are commonly found in hair dyes, perfume, cosmetics, detergents, cleansers, rubber slippers and plastic wearables.

There’s currently no cure for vitiligo; however, white spots on the skin can be minimized with a range of treatments. Simply put, patients can do one of three things with vitiligo: try to restore pigmentation, camouflage the white patches, or destroy the remaining color to have all-white skin.

Light therapy remains a “gold standard” but it may take anywhere between 8 to 16 months to restore natural skin color. Experimental treatments like afamelanotide, HSP70i, prostaglandin or simvastatin work better for someone with darker skin color. Topical Janus kinase (JAK) inhibitor from Incyte looks very promising but the company just started its registration process with the U.S. Food and Drug Administration (FDA). Dietary supplements, herbal mixes or vitamins are incapable of creating a lasting effect on their own; they can only mildly speed up effectiveness of the main therapy.

Sadly, white lesions frequently reappear when treatment is discontinued. Relapse is occurring in nearly half of all patients after 4–6 years of successful treatment.

Vitiligo should ideally be treated within two or three months of its first appearance, because as the condition progresses it becomes harder – but not impossible! – to treat. Even decades-old vitiligo spots may be re-pigmented with enough patience.

What are the challenges faced by those suffering from vitiligo?

Vitiligo has an overwhelming impact on the life of over 100 million people worldwide, causing severe mental trauma and often leading to depression, alcoholism, self-isolation and thoughts of suicide. Social neglect, bullying at school, workplace challenges are known all too well to nearly every vitiligo patient.

People in developing countries bear the greatest burden due to the risk for misdiagnosis of the disease, little to no access to effective treatments, widespread stigmatization and discrimination.

Source: Indonesian Society of Dermatology & Venereology

Source: Indonesian Society of Dermatology & Venereology

On your website, you name vitiligo as a “forgotten” disease. Why?

Many people call vitiligo the “forgotten disease” because there’s so little understanding and awareness about it. R&D funding into vitiligo needs to significantly improve – and not just on new medicines – but also on psychological interventions.

The situation has started to change recently. The U.S. FDA held its very first public meeting on vitiligo, where the community had a unique opportunity to speak directly to key stakeholders in vitiligo drug development. Another indication of the success of the vitiligo community efforts is that 18 U.S. State governors and numerous city mayors declared June “Vitiligo Awareness Month”.

However, there is still much work to be done and the VR Foundation aims to persuade major organizations such as the United Nations (UN) and the World Health Organization (WHO) to give vitiligo the attention it deserves.

What did the VR Foundation do for this year’s World Vitiligo Day, which was held on June 25?

Since its inception, the VR Foundation coordinates the global World Vitiligo Day campaign, while national and local vitiligo support groups organize conferences, walks, picnics, parades, and other events.

Unfortunately, the large-scale, in-person activities that typify World Vitiligo Day were not possible this year, due to COVID restrictions, so online events took place everywhere: in India, Kazakhstan, Kenya, Nepal, Nigeria, South Africa, UK and USA. Support groups from France and Hungary organized offline events.

Each year World Vitiligo Day is officially hosted by a different city. In 2021, Jakarta, Indonesia, acted as campaign virtual headquarters. In 2022, Mexico will take its turn to host the World Vitiligo Day celebrations.

Many thanks for your time and for the interview.

Impact and Treatment of Asthma: An Interview with John Harrington

We spoke with John Harrington, Respiratory Clinical Nurse Consultant at the John Hunter Hospital in New Lambton Heights, New South Wales, Australia. He is a keen advocate for asthma patients and has published the book “Fast Facts for Patients and their Supporters: Asthma” with Karger which is freely available online.

 

May 5 was World Asthma Day. Can you tell us what this day means to you and your patients?

World Asthma Day for me is an opportunity to reflect on how far we have come in asthma treatments and how far we have to go to in controlling a disease that still causes much death and illness in my country (Australia). 1 in 9 Australians have asthma and 400 to 500 people die of asthma each year. Asthma affects adult females more than males, and Aboriginal and Torres Strait Islander people are more likely to have asthma than white Australian. These inequities within the population of people with asthma further highlight the urgency to achieve better for our patients.

For my patients World Asthma Day is an opportunity to acknowledge themselves and others who suffer from ongoing difficulty in breathing, loss of career opportunity and high health care costs.

Could you please tell us about current and possible future approaches and research in treating asthma?

We are fortunate in asthma to have the opportunity to apply a treatment directly to the affected organ. For asthma the advent of inhaled steroids and, soon after, combined long-acting bronchodilators have reduced asthma attacks, persistent symptoms and deaths dramatically. These remain the successful mainstay of asthma treatment for over 90% of patients with asthma. They have very low side effects and are very safe medications.

Some patients that continue to have symptoms and attacks of their asthma are now able to be treated with powerful new medications called monoclonal antibody medicines. These target specific “switches” in the immune system that are the likely culprits in causing peoples’ asthma to be unresponsive to standard treatments. They are regular injections under the skin. Some of these agents are currently still under research trials. Bronchial thermoplasty is a recent innovation in asthma treatment; it is a surgical procedure using a bronchoscope (lung camera probe) to heat the patients’ airways up, thus reducing the buildup of bunched muscle around the airway. There is good evidence this reduces symptoms and asthma attacks; it too is for those that don’t respond to standard treatment.

What impact has the current COVID-19 pandemic made on your work and on the lives of people living with asthma?

It is difficult to overstate the impact the COVID-19 pandemic has had on how we work in hospitals and on all aspects of our lives. We were very fortunate in Australia that we locked down early and kept pressure from building on our health service. I was flat out at that time advising and preparing. There was a huge need for guidance around how our services operate. The level of collaboration was heartening and there was a strong sense of “being in it together”. COVID has changed the way we see our patients drastically, in some cases for the better (more Telehealth options). Many of my patients had a tough time from early 2020 right through to now as they self-isolated to avoid COVID.

The new vaccines have offered some hope to be able to see friends and family and to travel further than they have all year. Early on in the pandemic there were some medication shortages for asthma treatments; fortunately normal stocks resumed. We think people were more adherent to taking their preventer medications during the pandemic.

For those not familiar with the term: What are the tasks and responsibilities of a Respiratory Clinical Nurse Consultant like yourself?

A Clinical Nurse Consultant (CNC) has a varied and demanding role. I provide expert clinical advice and patient care across various service groups and patient populations. In real terms – I look at what we do for our patients and work out if we should be doing things differently and then work out how we are going to do that. I also see patients with a variety of problems that may have factors that make them a little complicated to treat. I have a role helping with research projects in partnership with our Hunter Medical Research Institute as well as doing my own research. I assist in training the doctors and nurses in my area to better treat patients with respiratory disease such as asthma.

Being based in Australia, what influence do the recurrent wildfires have on those suffering from asthma or other respiratory issues?

This is a great question. The Black Summer bushfires of 2019/2020 were some of the worst Australia had ever seen, with 2.7 million hectares burnt in my State of New South Wales alone. The bushfire smoke caused the air quality to deteriorate drastically. There were several days in Sydney where the Particulate Matter 2.5 microns (the dangerous particle size) measure was four times the WHO safe upper limit. This caused our respiratory patients to experience a significant worsening of their symptoms, and some required hospitalization.

In our severe asthma group, some of the patients have still not recovered to pre-bushfire levels. Air quality is a basic human right; it was distressing to see our patients being harmed by this need not being met. More needs to be done to combat climate change to help mitigate future risks of catastrophic bushfires.

Thank you very much for the interview!

Metastatic Prostate Cancer: How Will the Disease Affect Me?

This is the third part of our mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Metastatic Prostate Cancer”.

Bone Pain

Cancer cells that have spread to your bones activate the bone’s osteoblast (builder) and osteoclast (demolisher) cells, which build and recycle bone minerals. In turn, these bone cells activate the cancer cells. This cycle of activity between bone and prostate cancer cells results in abnormal bone production and destruction, which can cause pain.

What Does Bone Pain Feel Like?

Bone pain often starts in the lower back, pelvis or hips. Initially, the pain may be mild. Some men describe it as a dull ache, others a stabbing pain, which gets worse with movement. The bone may be tender to the touch. Over time the pain will increase and eventually become constant. The pain may affect your sleep or may even be incorrectly diagnosed as arthritic pain.

How Is Bone Pain Treated?

Everyone reacts differently to pain, so only you can describe how much pain you are in. Honest open discussions with your doctor are essential.

 

Numeric rating scale

 

With the right treatment, bone pain can usually be reduced or relieved. You should take pain relief regularly (every 3–6 hours), not on demand.

First, your doctor will make sure you are receiving the best possible treatment for your prostate cancer. You will then be prescribed painkillers according to your pain level. Your doctor will review your pain relief often, and adjust and substitute drugs as needed.

Tolerance to painkillers or drug dependency are not a problem for most people, but the side effects of these drugs will need to be managed; for example, constipation or effects on kidney function.

Ladder for cancer pain relief

 

Urinary Problems

Narrowing (stricture) or blockage of the urethra, or the symptoms of distant metastases, can cause:

  • difficulty urinating
  • visible blood in the urine (hematuria)
  • inability to pass urine (urinary retention).

Several small procedures that are not very painful can be carried out to relieve these symptoms. Dilatation usually provides short-term relief. A thin plastic rod is passed into the urethra to stretch it under local anesthetic.

If you have never had surgery or radiotherapy to the prostate, your urologist may propose a transurethral resection of the prostate (TURP). In most cases, this should be done sooner rather than later. An instrument is passed up the urethra to cut out the middle of the prostate, leaving an outer rim or shell. It is not a very painful procedure and most men go through it quite easily.

As long as TURP is carried out before cancer reaches the bladder neck and base, urine flow usually improves rapidly. The need to urinate often may take a few months to subside. Some men have an urgent need to go to the toilet and a burning sensation when urinating, but this usually disappears within a few days or weeks.

If the cancer spreads to the lymph nodes in the pelvis, the drainage tubes from the kidneys to the bladder (ureters) may become blocked, which can lead to kidney failure. In this situation, your urologist may insert a stent. Stents may need to be replaced every few months.

Bowel Problems

You may experience constipation, diarrhea, leakage from your back passage (fecal incontinence), urgency (rushing to the toilet), or stomach or anal pain.

What you can do to relieve: 
Constipation
• Increase the amount of fiber that you eat, including fruit and vegetables
• Drink plenty of water
• Keep as active as you can
• Ask your doctor about taking laxatives
• Speak to your doctor about the medications you are taking; some can cause constipation
Diarrhea
• Cut down on the amount of fiber that you eat
• Avoid alcohol, caffeine and spicy foods
• Speak to your doctor about the medications you are taking; some can cause diarrhea

Fatigue (Extreme Tiredness)

You may experience a decrease in energy, making it difficult to carry out your daily activities. Tiredness will also affect your concentration, emotions and sex drive. This may be caused by:

  • anemia (fewer red blood cells taking oxygen around the body) – this may also make you look pale
  • low testosterone (after hormonal treatment)
  • chemotherapy
  • radiotherapy
  • loss of appetite leading to a low calorie intake
  • substances produced by cancer cells which can affect the normal function of organs such as the liver and bone marrow
  • kidney failure
  • depression (often not diagnosed).

Your urologist will check that there is no reversible or treatable underlying condition causing your fatigue. Blood tests will reveal any problems in your bone marrow, thyroid, liver or kidneys and whether you have the right level of electrolytes and calcium.

To Help Combat Tiredness

  • Eat a well-balanced diet. If you are struggling to eat, nutritional support in the form of high protein drinks can also be of value.
  • Drink plenty of fluids.
  • Take vitamin and mineral supplements for any deficiencies. Vitamin D and calcium may be particularly beneficial.
  • Take gentle, regular exercise.
  • Use complementary therapies such as acupuncture, massage or meditation to make you feel better. (Note: only with the knowledge of your urologist and under the guidance of experienced practitioners in these fields who are aware of your condition).
  • Get enough sleep. If you can’t sleep, talk to your doctor.
  • Plan things you can look forward to, which will give you a lift (e.g. seeing friends, a round of golf, a trip to the theater).

Sexual Problems

Advanced prostate cancer can spread to the nerves and blood vessels that supply the penis, causing erectile dysfunction. Damage to the nerves or blood vessels can also occur during surgery or radiotherapy, although this is less likely in the hands of an experienced surgeon. Hormonal therapy can also cause impotence. Normal testosterone levels are essential for a healthy libido, energy and mood as well as good erections. For this reason, some patients may start on an oral anti-androgen to preserve sexual function.

Swelling of the Legs

Prostate cancer metastases can obstruct lymphatic drainage of the lower limbs, and in advanced cases the penis and scrotum (especially after radiotherapy), resulting in swelling called lymphedema. Too much fluid in the legs may cause pain, making it difficult for you to stay active. The skin can become red and infection can set in.

What You Can Do

  • Take care of your skin with regular cleaning and moisturizing
  • Avoid any pressure to the skin on your legs and feet
  • Report any sign of infection to your doctor and start treatment early
  • Take gentle exercise to help circulation
  • Use compression stockings and massage to reduce the swelling

Blood Clots

Large lymph nodes filled with prostate cancer cells can compress nearby veins that drain the lower limbs. This puts you at high risk of thrombosis (blood clots) in your legs, which can then travel to your lungs. Immediately after surgery, especially after extended lymph node dissection, you will be given anticoagulant injections under the skin. If you are found to have blood clots, you will then be given oral anticoagulants.

Eating Problems

You may feel sick or lose your appetite because of your cancer or the treatment you are having. Your doctor can prescribe anti-sickness drugs, and will be able to refer you to a dietician to help with supportive nutrition.

 

Please check out the other posts of our mini-series here:

 

Information based on Metastatic Prostate Cancer (Karger, 2017).

How Can You Deal with an Asthma Attack?

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the fourth post of our mini-series about asthma based on our patient booklet “Fast Facts for Patients and their Supporters: Asthma”. Here, we focus on how you can prevent and/or manage an asthma attack.

How Do I Prevent an Asthma Attack?

  • Take your preventer medication as prescribed. It is not unusual to miss a dose or two, but if you miss several days in a row your risk of having an asthma attack will increase. Make sure you are using your inhaler correctly. Make sure you always have a good supply of preventer medication.
  • Have a personalized written Asthma Action Plan to help you maintain good asthma control and guide you through the actions to take if your symptoms get worse. Make sure your Action Plan is clear about when to step up treatment. Make sure you have a good stock of all the treatments on your Action Plan.
  • Avoid triggers. Identify the triggers that worsen your symptoms and find ways to avoid them. Avoid people with coughs and colds to minimize your chances of picking up a virus.
  • Record your symptoms and peak flow readings between asthma reviews. Do not dismiss changes. If you are waking at night and/or finding things more difficult than usual, see your doctor.
  • Maintain good health and fitness. Eat healthily and stay active.
  • Get a yearly flu vaccine (and the pneumococcal vaccine if you are older). Discuss this with your doctor if you have an egg allergy. Flu vaccines do not cause attacks or worsen symptoms.
  • Stop smoking. This is the single best action you can take. If your child has asthma and you smoke, you are exposing them to harm. Even the smell of cigarette smoke on clothes can be an irritant for children with asthma.

How Do I Manage an Asthma Attack?

Despite appropriate treatment and good self-management, asthma attacks still happen. It is important that you know the signs and symptoms of an attack, you can recognize how severe it is, and you know what to do when one happens. These steps should be clearly shown on your Asthma Action Plan, and you should also talk to your doctor about this so that you know what medications to take.

Severity of asthma attack signs

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

Inflammatory Bowel Disease: How Can You Help Yourself and Stay Healthy?

This is the third part of our mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Inflammatory Bowel Disease”.

What Can You Do to Help Yourself?

  • Don’t despair when told the condition cannot be cured. Doctors don’t cure most conditions, they control them.
  • Take responsibility for your IBD. Don’t deny the diagnosis – defy it!
  • You can’t do it all alone. Choose a doctor who is interested in your condition and who is committed to long-term follow-up. Resist “doctor hopping”.
  • Stay in touch. Your doctor needs to get to know you and needs to see you when you are in remission as well as in relapse.
  • Don’t smoke. Smoking aggravates Crohn’s disease. Although stopping smoking can trigger a relapse of ulcerative colitis, the disadvantages of smoking outweigh any benefit from continuing to smoke.
  • Know your tablets, including the doses and how often you take them.
  • Don’t compare symptoms or treatments with others. No two patients are alike.
  • Know your immunization status/vaccination history. This is important because your doctor may want to treat your inflammation with drugs that suppress the immune system.
  • Be wary of what you read on the internet. Find reputable balanced sources of information.
  • Look after your general health.
  • Learn to accept uncertainty but know that it can be reduced by participating in the planning of your own care with your doctor’s team. Stick to the plan.

How to Stay Healthy

Healthy lifestyle advice given to the general public also applies to people with IBD.

Eat Well

Your diet may change at different stages of the disease and may depend on any complications that you have. Nutritional deficits are less common in ulcerative colitis than in Crohn’s disease. When disease is active, most patients will resort to fluids and a light diet that they can tolerate. This is acceptable in the short term (days) until you regain control.

IBD: What should I eat?

Sun Protection

Wear sunscreen every day on exposed areas of your body. Some drugs used to treat IBD (e.g. mercaptopurine/6MP [Purinethol]) make skin more sensitive to the sun.

Exercise

Exercise is no less important in IBD than it is for the rest of the population. Your doctor can advise you on appropriate levels of exercise, but you should suspect that you are doing too much if it becomes like work, excessively competitive or unenjoyable.

IBD: Why should I exercise?

Don’t Smoke

IBD: Why should I stop smoking?

Tips to Help You Quit Smoking

  • Make a list of reasons to quit, then promise to quit, set a date and stick to it.
  • Think about what you eat and drink. Some foods make cigarettes taste horrible (e.g. fruit and vegetables), so eat more of those. Some drinks are more likely to make you reach for a cigarette (e.g. alcohol, tea, coffee), so avoid those.
  • Exercise more – even a short walk can help to reduce cravings.
  • Try to avoid situations where others are likely to be smoking.
  • Think positively – even if you have tried before, you are going to do it this time!
  • Get support from family and friends.

 

Please check out the other posts of our mini-series here:

 

Information based on Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease (Karger, 2019).

Metastatic Prostate Cancer: Why Is My Cancer Staged?

This is the second part of our mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Metastatic Prostate Cancer”.

Cancer Staging

Staging is a way of recording how far your cancer has spread. Only advanced (late-stage) prostate cancer metastasizes. All prostate cancers are described or staged by the ‘TNM’ system and a Gleason grade and score.

TNM Staging

  • T – describes how far the Tumor has advanced, from T1 to T4.
  • N – describes whether one or more lymph Nodes are affected by the cancer. N1 disease means that your lymph nodes contain cancer.
  • M – describes evidence of Metastatic cancer outside the prostate. M1 disease means that your cancer has spread beyond the prostate.

 

TNM cancer staging

 

Metastatic prostate cancer is staged as T3N1M1 or T4N1M1, or any higher N or M stage. You may not be told your T or N stage if your cancer has spread to your bones.

Gleason Score

The Gleason score describes how aggressive your cancer is, in other words how quickly it will spread. A biopsy of your cancer cells will show different patterns under the microscope, which can be graded from 1 to 5.

 

Gleason score

 

There may be more than one grade of cancer in your biopsy samples. Your overall Gleason score is worked out by adding the most common grade seen in all your samples to the highest grade seen (e.g. 3+5).

The higher your Gleason score, the more aggressive your cancer, and the more likely it is to spread.

Gleason scoreWhat does it mean?
6Slow-growing cancer
7Moderate-growing cancer
8, 9 or 10Fast-growing cancer

 

Please check out the first post of our mini-series here:

 

Information based on Metastatic Prostate Cancer (Karger, 2017).

Asthma: What You Need to Know about Triggers, Risk Factors, Types and Severity

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the third post of our mini-series about asthma based on our patient booklet “Fast Facts for Patients and their Supporters: Asthma”. Here, we focus on the triggers, risk factors, types and severity of asthma.

Risk Factors

Asthma can develop at any age. The causes of asthma vary from person to person, and there are a number of risk factors (such as your genes, level of immunity, physical development and interactions with the environment) that increase the likelihood of asthma developing. They are different from the ‘triggers’ that bring on an asthma attack or cause asthma to worsen.

 

Risk factors of asthma

 

Triggers

Triggers do not cause asthma to develop, but they can make the symptoms of asthma worse or cause an asthma attack. Triggers are any substance or physical irritant that bring on asthma symptoms. Some bring on symptoms rapidly, but once the trigger is removed the symptoms tend to resolve.

Once you know what your triggers are you can try to reduce your contact with them (although some triggers are hard to avoid). This will reduce your risk of attacks and help you to manage your asthma better.

 

Triggers of asthma

 

Allergens

Allergens can be a risk factor for asthma as well as a trigger. As triggers, they often cause serious symptoms. If you think you may be allergic to something, talk to your doctor about allergy skin testing.

AllergenWhat you can do
Molds
• Common in areas where moisture builds up• Keep surfaces dry
• Check for mold behind appliances
• Check for mold before buying a new home
Animal dander
• Small particles of skin in animal fur that contain proteins (the true allergen)
• Animal saliva and urine can also contain these proteins
• Allergy to cat fur is common; allergies to dogs, rodents and birds also cause asthma symptoms
• Allergies to horse and rabbit hair can cause life-threatening attacks
• Try to avoid animals that make your symptoms worse
• If you have a pet that affects you, keep the animal outside and sleeping area regularly wash your pet’s fur and sleeping area
House dust mites
• Present in nearly all homes
• Most commonly found in bedclothes, mattresses and carpets
• Numbers increase in humid warm conditions (over 55% humidity, over 15°C)
• Vacuum daily
• Wash bedclothes frequently (in a hot wash over 55°C)
• Avoid man-made materials
• Replace carpets with hard flooring
Foods
• Common food allergies include nuts (especially peanuts), shellfish, eggs and berries
• Allergy to these foods can cause anaphylaxis (a sudden and serious allergic reaction), which can be fatal
• Check food labels and ask about ingredients in restaurants
• Be aware that peanut oil is commonly added to some foods
• If you have a serious food allergy, always keep an epinephrine (adrenaline) auto-injector with you and make sure you, and the people around you, know how to use it
Pollens
• Grasses, trees, flowering plants and weeds all release pollens
• Symptoms are often seasonal depending on when and how often different types of pollen are released
• Thunderstorms can break pollen into smaller pieces that go deeper into the small airways
• Be aware of pollen count forecasts; take allergy medications before symptoms start
• Plan outdoor activities for low-pollen times
• Stay indoors and keep windows shut on windy days and during thunderstorms
Latex
• Can cause both anaphylaxis and asthma symptoms on contact• Avoid contact with, for example, latex gloves, condoms or balloons

Different Types of Asthma

  • Childhood asthma is the most common type of asthma. It is often caused by allergies or exposure to viruses. Symptoms resolve in over two-thirds of children as they grow older.
  • Adolescent- and adult-onset asthma can develop after a severe viral illness or from an allergy.
  • Occupational asthma is triggered by certain exposures in the workplace (for example, dust or chemicals).
  • Seasonal asthma improves or worsens as the seasons change. Examples of triggers are cold weather and different types of pollen.
  • Exercise-induced asthma occurs during and after exercise.
  • Catamenial (or perimenstrual) asthma worsens around the time of a woman’s period.

Severity of Asthma

Your doctor will grade your asthma as mild, moderate or severe, depending on how bad your symptoms are and the level of treatment you require. Asthma with a lot of symptoms and/or very serious attacks or worsening symptoms is often described as difficult to control or severe.

 

Please check out the previous and the next post of our series here:

Please also check out the knowledge transfer “Let’s Talk about Asthma and Fungal Spores” published on this blog.

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

What Causes Inflammatory Bowel Disease and How Is It Treated?

This is the second part of our mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Inflammatory Bowel Disease”.

What Causes IBD?

The cause(s) of ulcerative colitis and Crohn’s disease are not fully known, but doctors are beginning to understand how these conditions happen. Early life events combined with a genetic (inherited) predisposition for IBD and various environmental or lifestyle risk factors stir up the immune system into an excessive inflammatory process that causes the tissue damage and symptoms.

Early Life Factors

The influence of modern lifestyle and the environment starts at birth and infancy, long before the onset of disease. We know this from studies of migrants. The younger the person is when they move from a region of the world with low levels of IBD to a region with high levels of the disease, the greater the risk of developing IBD in the new region. In addition, the children of migrants have a greater risk of developing IBD than the children of those who do not migrate.

Your microbiome is critical to the way in which your bowel, immune system and most internal organs mature.

 

Your microbiome

 

A normal microbiome early in life determines whether your immune system matures properly and learns how to tell what is harmless and what is harmful in the outer environment.

Anything that disrupts your microbiome in infancy may affect how your immune system matures. If your body’s community of microbes is disturbed, it increases the risk of your immune system becoming hypersensitive or failing to function normally in later life.

Beyond Your Control

No single lifestyle or environmental factor caused your disease. Almost every aspect of modern life has the potential to modify your microbiome – the food you eat, the house you are raised in, the size of your family, even your mode of birth. Other than smoking, there is little about modern life that you have complete control over.

Researchers are trying to find out how important each of these factors is. For example, we know that early exposure to antibiotics increases the risk of developing IBD in later life.

There is nothing you can do about the past and no one is to blame. However, you do have control over the future and can take steps to improve not only your IBD but also your general health.

Why Me?

Why me? Why did I get this? Why now? These are the questions every patient asks. You are not alone.

As modern societies have developed, IBD has become more common, with 100–200 cases per 100,000 people in Western countries for both Crohn’s disease and ulcerative colitis. Why some, but not all, people with the same lifestyle get the disease is not clear.

The “Perfect Storm”

There are over 100 genes that increase the likelihood of IBD developing, but these genes are common and are usually not enough on their own to cause the disease. Similarly, the environmental or lifestyle factors that increase the risk of IBD are also common.

Research has suggested that a coincidence of events is required, a kind of “perfect storm”, by which environmental and lifestyle factors interact with one or more genes, in the presence of one or more trigger(s) such as smoking or an infection, and these combine to launch the onset of inflammation.

Almost certainly, there are many other factors that increase the risk of IBD that medical science has not yet discovered.

How Is IBD Treated?

IBD is a marathon not a sprint, with the finish line being control over the disease to live a normal fulfilled life. Other than the hassle of taking medications and seeing your doctor regularly, this is achievable.

The Doctor–Patient Relationship

This is a two-way conversation for both to inform, listen and engage. At first, it will be crisis for you, routine for your doctor, but as you learn more and remove fear of the unknown you will gain confidence. Likewise, when your doctor gets to know you better, he/she will be better able to provide advice and treatment that suits you.

Get Informed, Get Support

Choose what you read on the internet wisely. It is not censored for inaccuracy. Select websites from reputable organizations. Know that you are not alone. There are support groups that most patients find helpful to join.

 

Patient support

Take Control

Be an active participant in the management of your IBD. This does not mean that your IBD should dominate your life, but:

  • Take responsibility for your own follow-up.
  • Keep hospital appointments.
  • Attend to your general health.
  • Don’t smoke.
  • Anticipate and prepare. For example, your doctor may recommend a medication that suppresses or modifies your immune system. You will need to be fully vaccinated for common infections well in advance of using such a drug. Update your immunization status with your doctor.

 

Please check out the first post of our mini-series here:

 

Information based on Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease (Karger, 2019).

What Is Metastatic Prostate Cancer?

This is the first part of our mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Metastatic Prostate Cancer”.

The word “metastasis” comes from the Greek “to move”. Metastatic prostate cancer refers to cancer cells that have traveled from the prostate to other parts of the body.

First, the Facts

  • Prostate cancer can spread to any part of the body, but most commonly to the bones and lymph nodes. How you feel will depend on where the cancer has spread to.
  • There is no cure for metastatic prostate cancer, but hormonal treatments delay progression of the disease in most men for, on average, 2 years, and many men benefit for much longer.
  • When initial hormone treatment stops working, there are other therapies that will improve quality of life, help to manage pain and extend life, although sometimes only for a few months.
  • Improvements in palliative care in recent years mean that, in the final stages of the disease, pain and discomfort can be minimized.
  • Metastatic prostate cancer affects every man differently. A frank, open discussion with your doctor about your future health will help you make the best decisions for you.

How Does Prostate Cancer Spread?

To understand how prostate cancer spreads, you need a minimal knowledge of the biology of the disease. First, we must look at the anatomy of the prostate.

 

Anatomy of the prostate

 

Learn about Lymph

The lymphatic channels are initially filtered through lymph nodes in the pelvis. Cancer cells from the prostate travel through blood vessels and lymphatic channels to other parts of the body where they re-implant and start to grow.

Where Does Prostate Cancer Spread to?

Prostate cancer does not spread in a predictable way, but it can spread to any part of the body. The prostate is surrounded by a rich lymph system, so prostate cancer tends to spread to the lymph nodes (lymph glands) in the pelvis first, and then to the bones of the lower spine and pelvis. Prostate cancer cells continue to multiply in these lymph nodes, eventually spilling over into the bloodstream.

 

Spreading of prostate cancer

 

Information based on Metastatic Prostate Cancer (Karger, 2017).

What Are the Symptoms of Asthma?

In accordance with the motto of this year’s World Asthma Day, “Uncovering Asthma Misconceptions”, this is the second post of our mini-series about asthma based on our patient booklet Fast Facts for Patients and their Supporters: Asthma. Here, we focus on the most common symptoms of asthma.

 

Symptoms of asthma

 

You don’t need to have all these symptoms to have asthma.

Wheezing

Wheezing is a high-pitched sound (whistling or squeaking) caused by the turbulence of air in your narrowed airways as you breathe in and out. When it is bad, you will be able to hear the wheeze outside your chest, but during quiet phases your doctor will need a stethoscope to hear it.

Wheezing that is caused by triggers, such as viruses, allergens or irritants, is strongly suggestive of asthma, especially when it gets better with reliever medication. Wheezing due to asthma usually comes and goes, especially in younger people. Not everyone with asthma wheezes; older people with asthma are less likely to wheeze, for example. Wheezing can also be caused by other illnesses, especially in children.

Coughing

The asthma cough is usually repetitive and irritating. It can be particularly persistent at night, during exercise or when laughing. However, there are many other causes of coughing. If you develop a persistent cough, do not assume that it is linked to your asthma – talk to your doctor about it.

Shortness of Breath

We all become breathless from time to time, for example after exercising or even from emotional stress, but in asthma it is due to the narrowing of the airways, which limits the amount of air moving in and out of the lungs. In addition, mucus may block your airways completely. If your asthma symptoms are bad you may even feel breathless when you are resting.

People with asthma can become breathless during gentle exercise because of persistent airway narrowing. This is different from exercise-induced asthma, which is an asthma attack due to exercise. Other physical problems, such as heart failure, can also cause breathlessness.

Breathing retraining can help to reduce long-term breathlessness. A breathing retraining method called Buteyko has been shown to reduce the need for reliever medications.

Chest Tightness

Chest tightness is not just related to the extra effort you have to make to breathe when you are short of breath – when people exercise very hard they do not get chest tightness and we know that the sensation of chest tightness is not relieved by ventilator support.

Current thinking is that the sensory pathways that give the feeling of tightness are related to the receptors involved in the narrowing of the airways.

Mucus

Mucus (also known as phlegm) is essential to maintain healthy lungs. Mucus lines the airways and traps dust, irritants and infections that enter with the air. Small hairs in the airways (cilia) move the mucus up to the mouth and nose, where you clear it by swallowing, coughing, sneezing or blowing your nose. This stops potentially harmful things from entering the deeper areas of the lungs.

A normal amount of mucus is about 20–30 mL a day (a bit more than a tablespoon). Most people do not see this amount as it is slowly cleared throughout the day and night and mostly swallowed rather than coughed up.

In asthmatic airways, mucus is sometimes produced in larger-than-normal quantities. It can also vary in color and consistency. Excess mucus can be a sign of a chest infection or exposure to irritants and pollution. It can also be a symptom of an asthma attack.

When the airways become inflamed, the production of mucus is the airways’ attempt to remove the cause of the narrowing by mucus clearance. However, when the airways are narrow the mucus can block the whole airway (mucus plugging), which makes the problem worse. Mucus plugging can starve whole parts of the lung of air. This can lead to death during an asthma attack.

Other Symptoms

Narrow inflamed airways can cause other unusual symptoms.

  • Frequent sighing and rapid breathing
  • Difficulty sleeping
  • Difficulty concentrating through the day
  • Persistent tiredness

All the symptoms described above can occur in other diseases, even when the main organ affected is not the lungs (for example, heart failure). That is why it is so important to test for asthma, to make sure you get the right diagnosis and treatment.

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

Inflammatory Bowel Disease: An Interview with Professor Fergus Shanahan

On the occasion of World Inflammatory Bowel Disease (IBD) Day we spoke with Fergus Shanahan, who is Professor and Chair of the Department of Medicine at University College Cork (UCC), Ireland. He was the Director of APC Microbiome Ireland from its foundation as the Alimentary Pharmabiotic Centre in 2003 until May 2019.

Furthermore, he has published the books “Fast Facts: Inflammatory Bowel Disease” (for health care professionals; together with David S. Rampton) as well as “Fast Facts for Patients and Their Supporters: Inflammatory Bowel Disease” with Karger. Both resources are freely available online.

 

Dear Professor Shanahan, May 19 is World IBD Day. Why is this awareness day so important?

In general, one might be forgiven for feeling saturated, weary or wary of awareness campaigns. They are not uniformly successful; nor are they always desirable. Some are counterproductive, particularly if words are not matched with deeds. However, I believe it is timely and appropriate to remind policy makers and health service managers of the needs of people with non-Covid disease, such as inflammatory bowel disease (IBD). Covid restrictions have been particularly hard on adolescents and young adults – the same age cohort most affected by chronic inflammatory disorders, such as IBD.

Awareness of their plight is particularly important now because Covid has become a convenient excuse for poor health service to non-Covid patients. No one disputed the need to cancel elective surgery to conserve hospital resources during the Covid crisis. But ‘elective’ does not mean ‘non-essential’ or ‘unnecessary’. The fickle nature of words is seldom appreciated by decision-makers distant from the front line, but it is critical to the welfare of non-Covid patients, particularly those with IBD. Patients with IBD have critical requirements which may be categorized as elective, but which are essential. Lack of awareness or attention to this urgency on the part of service managers and policy makers may jeopardize the health of many patients.

Could you please tell us about current and possible future approaches in treating inflammatory bowel disease?

I am an optimist in relation to the treatment of inflammatory bowel disease. One may be confident that the science of medicine will continue to advance. One can also project the increasing use of personalized strategies tailored for the individual needs of patients. Moreover, greater precision is likely as medical science begins to address the interaction of host genetic susceptibility (human genome) with the microbiome (the host’s other genome). I anticipate that the focus of research will shift toward risk prediction and prevention. In that regard, the most striking epidemiological fact concerning the occurrence of inflammatory bowel disease is its emergence as societies undergo socio-economic development.

In my view, we owe it to the developing world to try to prevent the emergence of Crohn’s disease and ulcerative colitis in such areas of the globe as they undergo modernization. Lessons learned in the developed world should be applied to disease prevention in the developing world. Greater attention must be paid to diet and other lifestyle factors that increase the risk of inflammatory bowel and other chronic inflammatory disorders, by modifying the microbiome. This much we can be confident of. Sadly, while the science of medicine will continue at pace, it seems less likely but equally desirable that the humanity of health services will progress at the same rate.

What impact has the current Covid-19 pandemic made on your work and on the lives of your patients?

In my view, patients with non-Covid disease have borne the greatest burden during the pandemic. This has led to delayed diagnosis and sub-optimal care. This has not, of course, been restricted to IBD; it has applied to all acute and chronic medical disorders. The medical profession and health services have tried to respond and mitigate the situation with virtual remote or telemedical consultation. Much can be achieved by use of virtual consultations and it is probable that this technology will continue post-Covid.

However, it is clearly suboptimal in many circumstances. Elderly patients have difficulty with virtual and digital devices for communication and may stay away. Others find it difficult to explore sensitive issues with their doctor that they would otherwise have divulged in a face-to-face consultation. Likewise, virtual communication places the clinician at disadvantage when unable to perform a physical examination and observe critical non-verbal communication cues and other signals from their patients.

What does patient centricity and empowerment mean for your daily work and your relationship with your patients?

There are numerous asymmetries in a patient-doctor interaction which I discuss in my book on “The Language of Illness”, published by Liberties Press, Dublin, in 2020. The most obvious of these is the fact that the consultation is often a crisis for the patient, while routine for the doctor. Knowledge was once another source of asymmetry but no longer. Patients can now acquire knowledge from more accessible sources; instead, they rely on their doctor for wisdom, perspective, advocacy, and guidance.

Sadly, language is a neglected source of asymmetry. Language should connect patients with their doctors, not separate them. The most elementary step in empowering a patient is to use a common language. Too often, doctors use disease-speak whereas patients speak in terms of illness; illness being the lived experience of disease. Patient centricity is impossible if the patient feels that he/she speaks a language that differs from that of their doctor.

In the blurb of your book ‘The Language of Illness’ you are quoted as being ‘enough of an expert to be wary of experts’. Could you explain what you mean by this?

My book “The Language of Illness” deals with many aspects of the inadequacy of medical language in addressing illness – the lived experience of disease. For me, an expert has achieved a commanding understanding of his/her field such that they can explain it in clear language to everyone. However, true experts also have sufficient understanding to be aware of how much and how little they know. A true expert will frequently say: “I don’t know”.

I believe that knowledge may come with arrogance whereas true expertise is more often accompanied by humility. My wariness relates to the distinction between true experts and presumed experts. The distinction is important when the stakes are high, such as for patients with significant illness. My advice to people seeking a suitable doctor to manage chronic illness is always the same: choose a doctor who is interested in you and your condition and who is sufficiently knowledgeable to admit what he/she does not know.

Many thanks for your participation!

May 19 Is World IBD Day: What Is Inflammatory Bowel Disease?

World IBD Day is a global event which takes place on May 19 each year. It is intended to raise awareness of Crohn’s disease & ulcerative colitis, which are collectively known as inflammatory bowel disease (IBD). Coordinated by the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA), it involves patient organizations representing over 50 countries on five continents. The aim of this year’s World IBD Day is to promote the discussion on IBD and wellbeing.

On the occasion of World IBD Day we are starting a mini-series about the condition based on our patient booklet “Fast Facts for Patient and Their Supporters: Inflammatory Bowel Disease”.

Inflammatory Bowel Disease: The Facts

  • Inflammatory bowel disease (IBD) comprises two distinct disorders with overlapping features: ulcerative colitis and Crohn’s disease.
  • These are chronic (long-lasting) conditions that come and go. They flare up and then become inactive. A flare up is called a relapse and an inactive time is called a remission.
  • Ulcerative colitis is excessive inflammation of the large bowel (colon and rectum). Crohn’s disease is patchy inflammation anywhere inside the digestive system, from the mouth to the anus.
  • No two patients are alike. Ulcerative colitis and Crohn’s disease differ greatly from one patient to another, and each disorder varies within the same patient over time.
  • Modern medicine has greatly improved the outlook for patients with IBD. These disorders can be controlled, and patients can live full productive lives.

Is IBD the Same as IBS?

No! IBD is not the same as the more common irritable bowel syndrome (IBS). The gastrointestinal system is not inflamed in IBS.

Who Gets IBD?

Ulcerative colitis or Crohn’s disease can occur in both men and women of any age but are most common in late adolescence or early adulthood. These disorders can be controlled, and patients live full productive lives.

Modern medicine has greatly improved the outlook for people with IBD and there is a lot that you can do to help yourself!

What Is Ulcerative Colitis?

Bloody diarrhea is the most common symptom. You may also notice slime (mucus) in your stools and have cramping pain when you have a bowel movement.

The severity of symptoms ranges from a few blood-stained bowel movements to a lot of diarrhea with dehydration and anemia from loss of blood. When inflammation is in the rectum only (proctitis), you may have bleeding with formed stools. Ulcers only occur in a few patients and only when the condition is severe.

The inflammation begins in the rectum. It may extend higher to a variable extent or involve the entire colon.

What Is Crohn’s Disease?

Symptoms depend on the part of the gut affected by the disease.

Patients with the most common pattern of disease usually notice pain and/or tenderness in the lower right abdomen, and may have diarrhea and weight loss.

Further Information

Further information on IBD can be found here:

 

Information based on Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease (Karger, 2019).

Bladder Cancer Awareness Month 2021: An Interview with Lydia Makaroff (Fight Bladder Cancer UK)

Each May, Bladder Cancer Awareness Month is a time to increase awareness of the disease, to raise funds for bladder cancer research, as well as to focus on patient education, support, treatment and care. In order to commemorate this important awareness event on The Waiting Room, we spoke with Dr Lydia Makaroff, CEO of Fight Bladder Cancer UK.

 

As an introduction, please tell us a bit about Fight Bladder Cancer, i.e., its inception, current situation, and goals, as well as your own role within the charity.

Fight Bladder Cancer is a dynamic, patient-led charity. We work to ensure that everyone affected by bladder cancer – patients, carers, family and friends – has a place to come to for support, information and advice. We ensure that someone is speaking up for them when key decisions are made about policy, care, and research.

We continue to work hard delivering the legacy of Andrew Winterbottom, a determined bladder cancer patient who saw the lack of patient leadership for bladder cancer in the UK and worked with his wife to form this charity from their garden shed in 2009.

As the CEO, I am responsible for managing the day-to-day operations of the charity, guided by our board of trustees. The majority of our trustees are patients and carers, who ensure that Fight Bladder Cancer continues to be driven by insights from people directly affected by bladder cancer.

What can be done about bladder cancer, also by the patients themselves?

Finding bladder cancer early makes it much more treatable. The main symptoms of bladder cancer are blood in pee, needing to pee frequently, pain or burning when peeing, and repeated urinary tract infections. If you have one of these symptoms, it’s probably nothing serious, but you should still speak to your GP or family doctor.

Many of the symptoms of bladder cancer are the same as those experienced by people with a urinary tract infection, urinary stones, cystitis, or prostate problems. It is important to use several tests to rule out more straightforward conditions before diagnosing someone with bladder cancer.

 

Fight Bladder Cancer UK

Source: Fight Bladder Cancer UK

 

What does your organization do regarding bladder cancer?

Fight Bladder Cancer has a vision of a future where everyone survives bladder cancer, and lives long and well. Our mission is to lead the fight against bladder cancer, driven by patient and family insights. We support people affected by bladder cancer, advise on research, raise awareness, and advocate for changes in health policy.

In your opinion, what are the overlooked needs of patients with bladder cancer?

We have found that over half the people with bladder cancer have never heard of the disease before they were diagnosed. People with bladder cancer need to know that they are not alone – there is a whole community of other patients out there.

They need to be able to have frank conversations with their medical team about all the aspects of their life that will be affected by bladder cancer, including peeing, sex, and body image. Patients need to know what treatment options are suitable for their particular situation, sit down with their medical team to discuss their own unique preferences, and jointly make a decision about which treatment is best for them.

 

Fight Bladder Cancer UK

Source: Fight Bladder Cancer UK

 

Why is a bladder cancer awareness month important and what are you offering for this event?

Bladder Cancer Awareness Month is important because it raises the profile of this neglected cancer. This vital month is a platform through which everyone can hear about the symptoms of bladder cancer – blood in your pee, repeated urinary tract infections, and increased frequency or pain when weeing.

Our signature colour for awareness month is orange! Whether you bake an orange cake, arrange a vase of orange flowers, or dress up in orange and go on a Wee Walk – please share your photos on social media with the hashtag #BladderCancerAware.

Take a moment on the 31st of May to blow beautiful bubbles, capture a picture, and share it on Twitter using the hashtag #BubblesForBladderCancer and tagging us @BladderCancerUK.

For more ideas, take a look at our 31 Days of May Activity Calendar.

On a personal note, what made you want to get involved with and work for Fight Bladder Cancer?

While I was living in Belgium, Andrew Winterbottom and I worked together for many years to raise the profile of bladder cancer in Europe. When he was diagnosed with terminal cancer, he encouraged me to move to the UK and apply for the role of CEO of Fight Bladder Cancer. It has been an honour to continue his legacy, and work to improve the lives of everyone affected by bladder cancer.

Dr Makaroff, many thanks for your time and for the interview!

May 5 Is World Asthma Day: What Is Asthma?

World Asthma Day, which takes place on May 5 in 2021, is organized by the Global Initiative for Asthma to raise awareness for asthma worldwide. This year’s theme is “Uncovering Asthma Misconceptions”. We take this opportunity to start a mini-series about the condition. This and the following posts are based on our patient booklet Fast Facts for Patients and their Supporters: Asthma.

Five Facts about Asthma

  • Asthma is a chronic (long-term) condition in which your airways become inflamed and swollen, often with too much mucus production. This reduces the amount of air flowing in and out of your lungs.
  • Asthma is common in children, but you can develop it at any age.
  • The main symptoms of asthma are wheezing, coughing, shortness of breath and chest tightness. These symptoms may occur day to day, with episodes of sudden worsening, often after exposure to a “trigger” such as pollen, pet fur, exercise or changes in the weather.
  • It is important to be in control of your asthma. Uncontrolled asthma can be extremely debilitating; a severe attack can lead to death.
  • Asthma is not a curable disease but there are many successful treatments that control the symptoms, even if you have difficult-to-control or severe asthma.

Understanding Your Airways

Asthma affects breathing tubes (airways) called bronchioles and bronchi that run from your windpipe to your lungs. These airways supply air to tiny fragile sacs called alveoli.

 

 

The airways are complicated structures made up of several layers. Each tube is lined by cells that have fine hairs (cilia) that keep the airway clean.

 

 

In asthma, the airways become narrower because:

  • the muscle around the airways tightens
  • the lining of the airways become inflamed and swollen
  • mucus builds up in the airway.

In addition, air gets trapped in the alveoli, stopping the proper exchange of oxygen and carbon dioxide.

 

 

As a result, it becomes more difficult to breathe in and out, and you will experience symptoms such as chest tightness, wheezing or coughing.

Bronchi are the large airways that connect your windpipe to your lungs. Bronchioles are smaller airways in the lungs that branch from the bronchi. Alveoli are the tiny air-filled sacs at the end of the bronchi where gases (oxygen and carbon dioxide) move between the lungs and the blood.

 

Please check out the previous and the next post of our series here:

 

Information based on Fast Facts for Patients and their Supporters: Asthma (Karger, 2020).

World Irritable Bowel Syndrome Day 2021: Spotlight on an Often Underdiagnosed Condition

On World Irritable Bowel Syndrome (IBS) Day (April 19), and in accordance with IBS Awareness Month, we spoke with Dr Kevin Barrett, general practitioner in Rickmansworth, Hertfordshire, UK, and primary care commissioner as well as chair of the Primary Care Society of Gastroenterology. He was the Royal College of General Practitioners (RCGP) and Crohn’s and Colitis UK lead clinical champion for the 2017–2020 Inflammatory Bowel Disease Spotlight Project.

 

Please tell us more about irritable bowel syndrome (IBS) and its causes. What distinguishes it from inflammatory bowel disease (IBD), and why shouldn’t these two be confused with another?

Irritable bowel syndrome is a functional bowel disorder which means there is no (as yet) identifiable pathology. It is common and affects up to 1 in 10 of the population. IBS can usually be divided into diarrhoea-predominant (IBS-D), constipation-predominant (IBS-C) or mixed, and it is likely to be a cluster of conditions with similar symptoms rather than one disease entity alone. Inflammatory bowel disease is an uncommon (approximately 1 in 140 people) multi-system inflammatory disease that appears to be triggered by a combination of genetic susceptibility and an unidentified environmental trigger. IBD follows a relapsing-remitting course and can affect the skin, eyes, joints and liver as well as the bowel. Crohn’s disease and ulcerative colitis are the two main subtypes of IBD. Neither IBD or IBS have a known cure but there are treatments that can help both diseases. It is important to make a correct diagnosis as the symptoms can also overlap with colorectal cancer, ovarian cancer, endometriosis, coeliac disease, microscopic colitis and other pelvic or gastrointestinal conditions.

Which modes of treatment are available for IBS?

Lifestyle change is the cornerstone of treatment for IBS wherever possible. Relaxation and finding ways to de-stress are important. Eating regularly and avoiding known trigger foods are a good starting point. Reducing fibre intake (while still aiming to achieve the recommended 30 g/day for adults) can make a difference. Dieticians may be available to help, particularly when guiding patients through the low-FODMAP elimination and re-introduction pathway. Antispasmodic medications can be of benefit, and medication for constipation or diarrhoea can help. Sometimes antidepressant medications are used as the gut has similar receptors to those in the brain, and psychological therapies such as cognitive behavioural therapy (CBT) can have high success rates.

From your experience, what are the do’s and don’ts when dealing with patients suffering from IBS?

The key is not to assume that there is a one-size-fits-all approach or to promise that the first treatment one recommends will work. A trial-and-error approach is needed, and it is important to explain that some patients’ symptoms have different triggers, hence the reason for having a wide range of therapies available to use. Building trust and a positive rapport is important. It is, however, vital that enough investigations are undertaken to exclude other pathology, and to review new symptoms that develop, as patients may have more than one gastrointestinal disease.

In your opinion, what can patients with IBS do themselves to alleviate their symptoms, to possibly change their lifestyle, and to improve their quality of life? Where can they find help?

There are a great deal of myths about IBS and an enormous number of diet books and internet articles about IBS which shows that many patients are affected and that they may have lost faith in traditional medical therapies. In order to maintain trust, it is important to signpost patients to reputable sources of information such as The IBS Network. Talking to others about their symptoms is important as IBS can cause anxiety in social situations and affect work, relationships and social lives.

How has the current Covid-19 pandemic made an impact on your work as a doctor? From your point of view, how has it changed the lives of your patients since last year?

Covid-19 has had an impact on all our lives; immunosuppressed patients with IBD have had to shield and had stricter restrictions on their lives than the majority, stress for all has been higher and this has led, unsurprisingly, to an increase in IBS-type symptoms. Many patients have been reluctant to seek health advice for worrying symptoms because of the fear of contracting Covid-19 from healthcare environments, and the change to a remotely delivered healthcare service has widened the divide between the IT-savvy and those unable to access technology. Endoscopy waiting times have soared and there has been an increase in the proportion of cases of colorectal cancer detected at a late stage. It’s not all bad news though; there are signs of greater collaboration between primary and secondary care which can only be a good thing for patients.

On a personal note, what made you want to become a gastroenterologist and/or general practitioner when starting your career?

When I went to medical school I wasn’t sure what kind of doctor I wanted to be. I was attracted to general practice because of the variety and the ability to look after patients over decades. Gastroenterology was something I was exposed to at an early stage of medical school, and it has cropped up time and time again over my career. I also like to champion the underdog, and gastroenterology doesn’t get the interest or funding like the glamorous specialities of cardiology or diabetes, but we have all known the impact the gastrointestinal symptoms can have on our lives.

Dr Barrett, many thanks for the interview!

What Are the Effects of the Current COVID-19 Pandemic regarding Sexually Transmitted Diseases?

We spoke to Peter Weisenseel, MD, a specialist in dermatology and venereal diseases who works at ‘Dermatologikum’ Hamburg.
He is also an author who writes in German and published his first book ‘Syphilis & Co.’ in 2018. At the moment, he is working on his second book.

 

In your experience, how did lockdowns and social restrictions affect the incidence of sexually transmitted diseases?

Overall, the incidence of sexually transmitted infections (STI) in Germany has only shown a slight decrease in 2020. This implies that people remained sexually active and did not stick to one partner only. The sexual encounters moved from obvious clubs and establishments into private areas. Internet and dating apps easily replaced chatting in bars or clubs.
In our office, we had more appointments for preventive STI testings in 2020 compared to the year before. The reason for this may be that people are more sensitized about health topics in general by the pandemic and do care more about themselves and their partners.

What do you expect concerning sexually transmitted diseases once the restrictions will be relaxed and people will be able to go out and date again?

This is hard to predict. In recent months, people have rather met for a walk with a coffee to go at the first date instead of dancing closely after a couple of drinks. Some people will stay careful even if nightlife and dating will return to the pre-Covid-19 status, but I can figure that there will be a certain peak of STIs in the summer/autumn of 2021. Normalization of international travelling will also increase the rate of STIs again.

What was the most surprising professional as well as private insight/experience related to the pandemic?

Professional: Lucky me, my daily work in the office was only slightly affected by the pandemic. Time-consuming travels to national and international conferences are replaced by video conferences. Not bad, right? The most surprising aspect for me: Procedures such as botox, fillers or aesthetic surgeries are booming since the start of the pandemic. People love to spend time and money on these procedures as they cannot go on holidays. Additionally, small bruises or marks after the procedure are hardly noticed when you work from home and wear face masks in public.

Private: As the German television program is quite numbing and boring after a few evenings at home, I used the additional spare time to write a book. It is a coming-of-age novel about a boy in the 1980s which will hopefully be available by the summer. And, to cut off the next question: Sexually transmitted diseases do not play an essential part in the book.

Dr Weisenseel, we thank you for your insights!

Irritable Bowel Syndrome: April Is IBS Awareness Month

Every year in April, IBS Awareness Month as well as World IBS Day (April 19) aim to raise awareness about irritable bowel syndrome (IBS). These events encourage those who have symptoms of IBS to seek medical advice and aim to reduce the stigma associated with IBS by encouraging people to talk more about this condition.

IBS is a condition that affects between 5 and 20% of the population. The exact number is difficult to determine as not everybody is seeing a healthcare professional about symptoms like stomach cramps, bloating, diarrhea and constipation, which could be signs of IBS. Sadly, the cause for this condition is still unclear, but there are treatment options that help to control the condition.

If you suffer from a gastrointestinal condition and suspect this could be IBS, check out the information we offer on our website Embarrassing Problems.

Further information on IBS can also be found here:

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