According to Sarcoma UK, sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues. The three main types of sarcoma are soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST). There are around 100 different sub-types of sarcoma.
We turned to Sarcoma UK to learn more about this condition and to call attention to Sarcoma Awareness Month, which is in July. Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma and campaigns for better treatments. We spoke to Megan Fletcher, Early Diagnosis Officer for Sarcoma UK.
What are the challenges in diagnosing sarcomas?
Sarcomas are not diagnosed as quickly and accurately as they could be. Patients are often unaware of its symptoms, and don’t visit their general practitioner (GP). 79% of sarcoma patients had not heard of sarcoma before their diagnosis. Improving this is essential, as it means an individual is more likely to recognise their symptoms as potentially cancerous, go to a GP, and increase the chances of them being diagnosed faster.
As sarcoma is uncommon and can present like other diseases, GPs can sometimes struggle to identify it. At their first appointment, 39% of sarcoma patients were either started on treatment for something else or were told their symptoms weren’t serious. Only a fifth of sarcomas are diagnosed after an urgent cancer referral from a GP, showing that GPs do not recognise the signs and symptoms as being that of a possible cancer and send patients on the right pathway. Patients also have to see GPs multiple times before their symptoms are taken seriously, with 35% of sarcoma patients seeing a healthcare professional more than 3 times before they were referred for further tests.
Getting the right diagnosis can be very slow, with 30% of sarcoma patients taking more than 6 months to receive an accurate diagnosis. Sarcomas are often missed on scans, either due to machines being misused or scans being misreported. This means patients with sarcoma are incorrectly told that they don’t have cancer and are consequently diagnosed at a later stage, and less likely to be offered curative treatment.
It is vital that as soon as sarcoma is suspected, patients are referred to one of the 16 specialist sarcoma centres across the UK to ensure they receive an accurate diagnosis and receive the best possible care. Sarcomas are extremely complex, and specialist centres have the expertise in this very rare disease required to give patients the best care. For example, a specialist pathologist is needed to ensure the type of sarcoma is accurately diagnosed and can be treated correctly: Diagnosis from non-specialist centres which were then reviewed by expert pathologists resulted in a major change in diagnosis 20–30% of the time. Ultimately, patients who are treated by a specialist sarcoma team have better outcomes, with the chance of survival post-surgery being significantly higher if surgery is co-ordinated by a specialist centre.
What are the current treatment options for sarcomas?
The treatment options for sarcoma include surgery, chemotherapy, and radiation therapy (with proton beam in certain circumstances and radiofrequency ablation for some lung metastasis).
What does Sarcoma UK plan for Sarcoma Awareness Month?
We know that only 1 in 4 people in the UK have heard of sarcoma, so creating awareness is a hugely important part of what we do. Sarcoma Awareness Month every July is an opportunity to talk to the press and ask our supporters to help amplify our messages.
This year, we are concentrating on action. Early diagnosis of sarcoma is a vital topic for us. We are launching practical projects to help clinicians, healthcare professionals and the public recognise and diagnose sarcoma faster and more accurately, which ultimately will save lives.
We have also partnered with Genomics England to highlight the importance of genomics in diagnosis with a range of patients, researchers and others contributing stories for a national press rollout through July.
Keep up with our activities this July on our website.
Can you tell us about the research projects Sarcoma UK is currently funding?
As a rare and complex cancer with few treatment options beyond surgery, research is vital to improve outcomes for people affected by sarcoma. Sarcoma UK has invested over GBP 5 million into research projects since 2009. We have just announced funding for nine new projects taking place in universities across the UK, exploring everything from cancer-bursting viruses as a potential new treatment for sarcoma to making treatments more effective in children.
Lots of the research we fund focusses on understanding sarcoma better in the laboratory, such as exploring particular genes which we know are important in how sarcoma develops. Researchers are already taking this knowledge to the next level through new work, developing ways to target these important genes and personalising treatments to each patient’s needs. Some research is focused around improving the quality of life for patients, such as tackling the anxiety many people feel around their sarcoma coming back after treatment and making the journey to diagnosis shorter and more straightforward. Ultimately our research programme supports the best science to improve care for people with sarcoma through more accurate diagnoses and better treatments.
Sarcoma UK has recently appointed a Patient Involvement Coordinator. Why did you see a need for this role and what is their function?
Sarcoma UK has an established, dedicated network of patients and supporters who have helped direct our work since the creation of the charity over 10 years ago. In February 2022, Sarcoma UK appointed a Patient Involvement Coordinator to ensure the voice of the sarcoma community is represented throughout the organisation’s work. Not only is this fundamental to our vision, but patient involvement brings a unique perspective and true insight into how the charity should operate, the services it will provide and the research it funds.
There are a number of significant benefits for organisations which involve supporters, including better informed decisions (less wastage in terms of financial and time costs), as well as bringing staff closer to the lived experience of people affected by sarcoma.
An example of recent patient involvement at Sarcoma UK was the recent Research Grant applications. Research projects we fund are now selected with the help of sarcoma patients and their families. Our Research Grant Lay Reviewers help to inform researchers of the things that matter most to people affected by sarcoma, evaluating each proposal on the relevance and importance of the project, the way the researchers communicate to non-expert audiences, and the quality of plans to involve patients in the research.
Many thanks for your time and for the interview.
Blood. According to a saying it is “thicker than water”, and for one poet it is “a very peculiar juice”. We know that blood consists of plasma, red and white blood cells, and platelets. And we know that each component plays a different role: Platelets enable clotting, white blood cells are part of the immune system, red blood cells carry oxygen and carbon dioxide, plasma carries nutrients and waste.
With the onset of the COVID-19 pandemic, blood plasma got special attention as it might play a role in the treatment of an infection with the coronavirus.
On the occasion of World Blood Donor Day on June 14 we turned to a specialist, who was among the first to study the effect of convalescent plasma. Professor Andreas Buser is Director of the Regional Blood Transfusion Service of the Swiss Red Cross and head of Transfusion Medicine, Hematology at Basel University Hospital in Switzerland. He teaches at the University of Basel.
Professor Buser, please tell us about the study of convalescent plasma as a treatment for COVID-19 patients you took part in: What is the aim of this study? Who initiated it? When did it start? What are the findings so far?
The idea in essence: Antibodies against Sars-CoV-2 are naturally produced by the immune system during an infection with the coronavirus. Convalescent plasma, i.e. plasma from donors who have Sars-CoV-2 antibodies, is administered to severely ill COVID-19 patients in the hope that the antibodies in the transfused plasma will act in the body and accelerate recovery and prevent a fatal outcome in affected COVID-19 patients.
Time was extremely short, the virus was on the rise. No one knew at the time whether the idea would work. There were no information or facts about COVID-19 anywhere in the world.
We have only treated a few patients in our hospital and cannot draw any definitive conclusions. However, numerous studies have been carried out worldwide, some of them very well controlled, but with divergent results. There are large consortia that are now trying to draw conclusions for possible new waves of SARS Cov-2 or other viruses from the published and non-published data and experiences.
“Antibodies against Sars-CoV-2 are naturally produced by the immune system during an infection with the coronavirus.”
What else is blood and/or plasma being used for with regard to medical treatment?
Blood products are used for various medical conditions. Red blood cell concentrates (RBCs) are used to improve the oxygen supply to the organs in cases of anaemia. Anaemia can be caused by iron deficiency, haemorrhage, or reduced blood production due to diseases affecting the bone marrow (site of blood production).
Platelets are used to prevent or treat bleeding when there are too few platelets (e.g. in patients with leukaemia and its treatment) or when platelets are not functioning properly.
Plasma is used when bleeding occurs and the clotting factors that are needed cannot be replaced in any other way.
“Blood products are used for various medical conditions.”
How have blood transfusions and the use of blood components developed from the first documented transfusion in 1818 until now?
Since the first human-to-human blood transfusion in 1818, many important inventions have been made that have led to the current form of transfusion therapy.
Undoubtedly, the most important discovery was that of blood groups (the AB0 blood group system), as was first described by Karl Landsteiner in 1900. Today, 43 blood group systems are known and their knowledge and the current forms of diagnostic possibilities make it possible to find the best compatible blood product for the vast majority of patients. Other very important milestones were of course the possibility of storing the blood products and components, testing for infectious diseases which can be transmitted by blood and the technology of pathogen reduction of blood components.
“The most important discovery was that of blood groups.”
What developments are you expecting in blood transfusion in the next 10 years?
I expect more knowledge about when to transfuse and when not to transfuse.
Especially “personalized” blood products will be increasingly used to ensure optimal patient care. Securing the blood supply will certainly be a major challenge. In addition, we are moving in an environment that is becoming more and more regulated, which brings with it a challenge for blood establishments.
“I expect more knowledge about when to transfuse and when not to transfuse.”
The use of artificial organs and bone replacement has developed into a standard procedure over the years. Why has it not yet been possible to create artificial blood? Do you expect this to happen one day?
Artificial blood substitutes or blood from bioreactors (blood pharming) will certainly experience further development and will represent a therapy option at least for individual patients with complex blood group constellations, at least in rich countries.
If you were granted one wish for “World Blood Donor Day”, what would it be?
My wish is that, with the great help of donors, we can provide the right blood product at the right time for all patients. And I hope that the blood supply can also be sustainably improved in countries with fewer resources.
Thank you very much for your time and your insight.
Menstruation is often inconvenient, sometimes painful, but mostly manageable. This applies to an environment with good sanitary standards and a general comprehension of the requirements necessary to handle the situation with dignity.
However, stigmatization of menstruation compromises menstrual health and hygiene which can lead to exclusion and discrimination. In certain societies, this might mean the end of education, of earning and providing for an income, of fully and equally participating in everyday life.
Another aspect of menstruation is that unbeknownst to most menstruators, the use of sanitary products can have unwanted side effects, not only for the health of those using them but also for the environment.
For Menstrual Hygiene Day on May 28 we wanted to know more about this topic and turned to Women Engage For a Common Future (WECF), a nonprofit network dedicated to a gender just and healthy planet for all. We spoke to Johanna Hausmann, consultant at WECF Germany, about the topic of toxic-free periods. You can download WECF’s brochure “Toxic free Periods” edited by WECF International based in the Netherlands here for free, and the German publication “Giftfreie Menstruation” is available here.
First of all, can you please tell us more about WECF?
Our international network consists of over 150 women’s and civil society organizations implementing projects in more than 50 countries. We believe that a sustainable future and environment needs holistic solutions reflecting the lives of people concerned. We believe in eco-feminist solutions based on our and our partners’ visions and needs. That is why we have an intersectional approach working on transformative gender equality and women’s human rights in interconnection with climate justice, sustainable energy & chemicals, less toxic waste, safe water & sanitation for all.
“We believe that a sustainable future and environment needs holistic solutions reflecting the lives of people concerned.”
One of your issues is “Menstruation Matters”. What is this about?
We stand up for the right to menstrual health and campaign for breaking the taboo on menstruation and reproductive health. Around the world girls, women and gender non-conforming people suffer from the stigma of menstruation through discrimination and often also the inability to afford sanitary products. However, sanitary products do not only affect people’s opportunities to participate in society but also have a huge impact on our health and our environment:
Many conventional menstrual health items have high levels of plastic and contain chemicals such as bisphenols or phthalates which can have negative health impacts. Labelling and information are missing. We are exposed to these substances without knowing. Along with this, disposable products create tons of waste which pollute the environment. We advocate for laws that prevent toxic substances in products, such as menstrual health products and single use plastic laws, and promote affordable and sustainable alternative period products. We campaign for the ban of taxes on period products, and, last but not least, we support partners with building menstrual health management proof toilets in schools.
“We stand up for the right to menstrual health and campaign for breaking the taboo on menstruation and reproductive health.”
Can you tell us more about the environmental aspects of sanitary products?
An average standard menstrual pad could contain up to 90 percent plastic. Plastic itself contains next to its fossil fuel-based basic material many chemical additives, often harmful to our health. These plastic particles end up in our bodies and in the waste dump, in the sea, in rivers and on beaches. This waste is polluting our beaches and oceans. But I don’t want to put the responsibility on the shoulder of women or people who menstruate; the gap of information, missing regulations to ban hazardous chemicals in products in general and insufficient toxic-free products on the market (world-wide) are reasons for the negative impact of those products.
A changing social and cultural attitude towards our periods could have a major impact on both our own health and on our mountains of waste. For example, greater openness would make wearing healthier options such as washable pads so much easier and more accessible.
“A changing social and cultural attitude towards our periods could have a major impact on both our own health and on our mountains of waste.”
Why is menstruation a political topic?
If there is one issue at the intersection of health, environment and the rights of women and gender non-conforming people – it is our menstruation. Here in Germany, in the Netherlands as well as in many other countries, both among the public and the policymakers, little attention is still paid to the environmental and health problems associated with our periods.
In addition to the existing social taboo on menstruation itself, the environmental and health aspects remain underexposed in the current social debate. As mentioned above, disposable menstrual products are not only harmful to the environment, as landfill waste and polluter of our sewers, beaches and oceans, but they may also be harmful to our health. In this respect, it is unacceptable that producers do not have to disclose the ingredients they use.
“Little attention is still paid to the environmental and health problems associated with our periods.”
What is the purpose of your brochure “Toxic free Periods”?
With the publication “Toxic free Periods” from our colleagues from WECF International and the German publication “Giftfreie Menstruation”, we do not only want to inform people who menstruate and their surrounding world but also encourage the use of more sustainable, safer and cheaper alternatives. We advocate for more openness, inform about facts and present practical knowledge about menstruation. Our particular focus lies on the unfair aspects of “common” menstrual products and habits and the resulting pollution of the environment.
Would you like to contribute to this discussion as well? Make it a topic in your own circles, talk about it at home. After all, openness is good for the women’s cause, the environment and our health.
Many thanks for your time and for the interview.
April is National Oral, Head, and Neck Cancer Awareness Month. Although oral, head and neck cancer is the 6th leading cancer by incidence worldwide, it does not get as much publicity as other types of cancers. We turned to the Head and Neck Cancer Alliance to shed light on public perception, symptoms, risk factors, prevention, and the importance of screening of oral, head, and neck cancer.
Oral, head and neck cancer tends to be sidelined in the public perception. What is the reason for this neglect?
Although head and neck cancer is the 6th most common cancer by incidence worldwide, few people know enough about it. There may be a few reasons for this. First, while other cancers like breast cancer or colorectal cancer affect one anatomical part of the body, head and neck cancer can affect many parts (e.g., the tonsils, tongue, sinuses, etc.). Head and neck cancer is more of a “family” of cancers rather than a cancer affecting one area. Since we’re talking about cancer that affects many parts of the body, the public likely doesn’t see it as “one” cancer.
The second reason likely has to do with its historical risk factors. In the past, the majority of head and neck cancers were caused by tobacco use and heavy alcohol consumption, so there is a stigma that may be associated with this cancer. In the public perception, we believe that many people still harbor the idea that patients “did it to themselves”. Although this has never been a fair perception, nor an accurate one (especially today), it likely impacts the public’s perception about how much attention they need to pay to it, particularly if they do not use tobacco or consider themselves heavy drinkers.
“Since we’re talking about cancer that affects many parts of the body, the public likely doesn’t see it as “one” cancer.”
What are the symptoms of oral, head and neck cancer?
The symptoms of head and neck cancer can vary by the part of the body affected, for example:
- Mouth cancer symptoms may include a white or red patch on the gums, the tongue, or the lining of the mouth; a swelling of the jaw that causes dentures to fit poorly or become uncomfortable; and unusual bleeding or pain in the mouth.
- Throat cancer symptoms may include swollen lymph nodes in the neck; trouble breathing, speaking or swallowing; pain when swallowing; pain in the neck, the throat or one ear that does not go away; frequent headaches, pain, or ringing in the ears; or trouble hearing.
- Cancer of the larynx (voice box) may first appear as changes in the voice, like hoarseness that doesn’t go away, pain when swallowing or ear pain.
- Paranasal sinuses and nasal cavity symptoms include sinuses that are blocked and do not clear; chronic sinus infections that do not respond to treatment with antibiotics; bleeding through the nose; frequent headaches, swelling or other trouble with the eyes; pain in the upper teeth; or problems with dentures.
- Cancer of the salivary glands may first appear as swelling under the chin or around the jawbone, numbness or paralysis of the muscles in the face, or pain in the face, the chin, or the neck that does not go away.
Alcohol and tobacco are the two most important risk factors for oral, head and neck cancer. How have restrictions on the sale and consumption of alcohol and smoking bans affected cancer rates, especially the incidence of oral, head and neck cancer?
In the past several decades, we have seen a decline in head and neck cancers caused by the traditional risk factors of tobacco use and heavy alcohol consumption. This is likely due to increased awareness of health risks, improved public health and policy measures and increasing support and resources for tobacco cessation. However, while many types of cancer have been declining overall, the rates of head and neck cancer have actually been increasing overall, despite the reduction in cases caused by tobacco and alcohol use. This increase is due to infection with human papillomavirus (HPV), a major risk factor for cancer of the pharynx (throat).
“The rates of head and neck cancer have actually been increasing overall.”
With the vaccination against HPF available since 2006 the cases of cervical cancer, which are commonly associated with an HPV infection, have declined. Have the cases of oral, head and neck cancer which are due to HPV infection declined accordingly? If not, why is this and what should be done?
At this time, we have not yet seen decreases in head and neck cancer rates as a result of HPV vaccination. However, we do hope to see that occur in the coming decades as we know there is a significant latency in HPV infection leading to head and neck cancer. So, this all comes down to timing. The HPV vaccine is meant to be given to preteens, around the ages of 11 to 12 years old. Because the vaccine has only been available for 16 years, those who were among the first to be vaccinated are only in their mid to late 20s. Additionally, when it was first introduced, the HPV vaccine was heavily targeted to girls (due to its association with cervical cancer), so many boys who could have been vaccinated, were not. Unfortunately, HPV-related head and neck cancer affects males 3 to 4 times as often as females. So, there are many young men out there who are unprotected.
As head and neck cancer caused by HPV infection does not occur for many years after exposure to the virus, sometimes decades later, those who are being diagnosed today with HPV-related head and neck cancer would not have had access to the vaccine when they were preteens because it was not yet available. As the first cohorts of HPV-vaccinated individuals reach adulthood and move toward middle age, we are hopeful that there will be obvious and significant decreases in the rates of HPV-related head and neck cancer.
“At this time, we have not yet seen decreases in head and neck cancer rates as a result of HPV vaccination.”
What should be done with regard to the prevention of oral, head and neck cancer, both by individuals and by politicians?
Individuals should take an active role in reducing their risk for head and neck cancer by quitting tobacco, reducing their consumption of alcohol, and using safe sex practices to prevent infection with HPV.
Those who have children—both girls and boys—should have them vaccinated against HPV to prevent the six types of cancer that HPV can cause, including head and neck cancer. There are six types of cancer caused by HPV (oral, head and neck, penis, anus, vagina, labia and cervix) that are, effectively, vaccine-preventable. To reduce the mortality rate and morbidities caused by cancer in future generations, it is important to act now, so that we can protect as many individuals as possible. The overall effect of reducing cancer rates and related morbidities within the healthcare sector could be significant and beneficial for everyone.
“It is important to act now to reduce the mortality rate and morbidities caused by cancer in future generations.”
As with many other types of cancer, early diagnosis is key to successful treatment. What do you recommend with regard to screening?
There are currently no screening tests for head and neck cancer like there are for cervical cancer (Pap test), breast cancer (mammograms), or colorectal cancer (colonoscopy). However, individuals can conduct self-exams of their mouth and neck to look for early symptoms that should be evaluated by a physician. To learn how to do a self-exam, visit this website. Individuals can also ask their dentist or physician to conduct a head and neck exam for them during their routine preventive visits.
Thank you very much for sharing your insight!
On the occasion of Dementia Action Week, which is held from May 16 to 22, we got in touch with Professor Janice Murray and Professor Adele May. Together with Professor Shakila Dada they wrote the Fast Facts booklet “Dementia and Augmentative and Alternative Communication: Supporting Conversations”.
Janice Murray, who is Professor of Communication Disability at Manchester Metropolitan University in the UK, is an advocate for maintaining connectedness with those living with dementia through meaningful, co-constructed interactions. She is the current chair of the AAC Committee for the International Association of Communication Sciences and Disorders (IALP).
Adele May holds a PhD in Augmentative and Alternative Communication (AAC) from the Centre for AAC at the University of Pretoria, South Africa. As a speech language pathologist, she has a special interest in developing interventions that focus on functional real life outcomes for persons with communication disabilities.
Professor Murray, Professor May, what is dementia and what are some of the impacts on families and supporters?
Janice Murray: As a syndrome, dementia is the general label given to a cluster of irreversible changes in cognitive function that include memory abilities, communication skills, reasoning, making sense of your world, and executive functioning skills. Dementia is one of the major causes of disability in older adults and is recognised as a public health priority by the World Health Organisation. Currently there are 50 million people living with dementia worldwide. A global dementia prevalence is forecasted to reach 75 million by as soon as 2030.
Every year, there are nearly 10 million new instances of dementia diagnosis, and the impact of dementia on the health and wellbeing of those living with dementia, including family members, remains poorly understood. In particular, the economic health and social consequences require better understanding to support targeted and timely interventions.
“Dementia is one of the major causes of disability in older adults.”
Adele May: As much as dementia is a biomedical condition, it is actually also a social condition, which means that dementia not only affects the person living with dementia, but also the people around them, for example family members. The person living with dementia experiences changes in cognition and communication from a previous level of functioning. Family members are equally affected. In most instances, family members provide the main caregiving role for persons with dementia, and caring for a person with dementia can pose significant emotional and caregiving challenges.
“Dementia is also a social condition.”
How does dementia impact on the communication between the individual, the carers and the family around them?
Adele May: Communication is an integral part of our human experience. It creates possibilities to develop a sense of connexion with others. Persons with dementia may struggle to find the right word to use, so they may use vague words or what we call empty speech instead of using the actual word they want to describe. They have difficulty recalling recent information and may repeat questions that have already been answered. They also have a tendency to confuse names of people and difficulty in maintaining a topic of conversation. So, essentially this affects the meaning of what is being expressed.
The dementia impacts on one’s ability to be understood, to effectively communicate one’s feelings and preferences and opinions, and to take part in a conversation in a meaningful way. And over time, with the loss of language, persons with dementia may withdraw from social interaction altogether and may appear non-communicative. Maintaining the sense of connexion with persons with dementia becomes progressively difficult, because we know that communication is a reciprocal process where information is exchanged between people.
The communication difficulties impact the people with whom persons with dementia interact, and these are the everyday conversational partners such as spouses, friends, caregivers, and health practitioners. Conversational partners may be distressed at not knowing how to provide appropriate communication support. Therefore, techniques and strategies to support communication throughout the progression of dementia are imperative.
“Techniques and strategies to support communication throughout the progression of dementia are imperative.”
This is obviously where augmented and alternative communication (AAC) can be helpful. What exactly is AAC and how does it work?
Janice Murray: Augmentative and alternative communication, or AAC, is a term used to describe a wide range of techniques and tools that are used to support communication. But it also may be a tool or technique that can support challenges in terms of formulating the words and producing them in a speech stream.
AAC involves providing resources that attempt to compensate for temporary or permanent or changing communication challenges for an individual. The main purpose of AAC is to support the maintenance or the development of typical participation in many aspects of daily life. We take communication for granted until we lose the capacity to use it, or we don’t develop the capacity to use it in a way that is typically recognised, so AAC is trying to level the playing field of participation for individuals with communication disability.
The word augmentative acknowledges that some people require the use of supportive strategies to enhance existing or partly functional spoken communication. Alternative communication, on the other hand, refers to strategies that entirely replace the natural speech attempts. Depending on the person’s complex communication needs, AAC strategies can either augment their communication abilities or provide alternative ways of communicating.
In the field of AAC, different forms of communication are described within two broad categories:
- Unaided AAC describes any form of communication that can be achieved without any additional tools, resources, or equipment. In other words, the person’s body is used to effectively convey meaning, typically for those with adequate motor ability. This could include using sign language or pantomime to get your message across, and we all adopt these strategies when perhaps we can’t remember the word we want to use.
- Aided AAC describes any tool or resource or technology which can act as a substitute for inadequate speech production or language skills, or which can support you to focus on the conversation. These may include quite straightforward things like using photograph albums, so you have a joint focus of attention and recognise the people in the photograph or the activities happening in the photographs. It could be more formalised into something like laminated pictures or word boards. Tablet devices are very much used now, with downloadable picture symbols and other visual materials, and there are also specialised electronic communication aids.
When used together, both aided and unaided communication strategies highlight the multimodal nature of effective communication, and a combination of these can be particularly supportive for those living with dementia and their conversational partners.
The main purpose of AAC is to support the maintenance or the development of typical participation in many aspects of daily life.
Adele May: AAC is helpful to persons with dementia in particular as various forms of AAC techniques and tools and resources can aid their understanding of a situation and enable them to convey a message effectively. The use of AAC supports persons with dementia to participate in decision making conversations, and to share or exchange information and feelings. AAC helps to support and maintain conversational autonomy in those living with dementia.
Conversational partners can use AAC techniques to scaffold or support an interaction to ensure that the communication attempts of a person with dementia are as effective as possible. However, to be most helpful, it is important to start with communication support through AAC as early as possible and ensure that it is tailored to the preferences of each individual living with dementia.
“AAC helps to support and maintain conversational autonomy in those living with dementia.”
What can individuals with dementia and their supporters get from your book?
Adele May: We have developed a freely downloadable resource in the form of a poster which gives key messages from our book. This can be downloaded and pasted in everyday settings like care homes, hospitals, and waiting rooms. It provides essential information for family members, caregivers or anyone that may be affected to help someone with dementia or for those who just need general information on the condition.
Janice Murray: In particular, I would like to think that there would be something for a range of medical staff, health care workers, and family members to recognise what can be positively achieved in terms of supporting and providing intervention that is tailored to the needs of their person with dementia and how that will change over time.
Many thanks for the interview and for the insight!
Patients with chronic health conditions, particularly chronic kidney disease, are at heightened risk for psychiatric disorders. A group of scientists conducted a study to learn more about the mental health of patients with glomerular disease and published it in the journal Glomerular Diseases. We spoke with the corresponding author of this study, Hailey E. Desmond from the University of Michigan, Ann Arbor, MI, USA.
How did you come to the hypothesis on the association between psychiatric disorders and glomerular disease?
Since 2015 I have collaborated with a program called the Kidney Research Network (KRN). Within the Kidney Research Network we are supported by a patient advisory board comprised of patients and caregivers of those with glomerular disease. Glomerular diseases are a group of kidney diseases that affect the filters in the kidney. The symptoms and treatments for glomerular disease have a significant impact on patients’ quality of life. During conversations with our advisors, the topic of the mental health implications of glomerular disease regularly came up. I have a history working in mental health disorders and wanted to champion a study to explore the mental health of patients with glomerular kidney disease. After reviewing existing literature, we found this to be a topic that was not well addressed so we pursued the KRN registry of approximately 1,200 patients to investigate the relationship.
What would be the take-home message for interested patients who may read your article?
Like other chronic conditions, individuals with glomerular kidney disease may be at increased risk of experiencing anxiety, depression, and other mental health disorders. Our study found that about 1 in 8 patients were diagnosed with a mental health disorder after the onset of kidney disease. The rate was highest among adolescents when compared with adults and younger children. Furthermore, those who had end-stage kidney disease (kidney failure) were more likely to be diagnosed with a mental health disorder. We are working to raise awareness in the health care community and encourage individuals with glomerular disease to talk to their health care team if they are experiencing signs of anxiety or depression.
How could your findings change patients’ lives?
We hope our findings can empower patients to recognize their risk for these conditions and feel confident discussing them with their health care team as part of their overall health.
Kidney Research Network cores (source: Hailey E. Desmond)
Which group of patients may especially benefit from your research?
While all patients may benefit from the knowledge gained from this study, we feel it is particularly impactful for adolescents and caregivers of adolescents. It is important to recognize and engage in discussions to encourage mental health.
What are the next steps to translate your research findings to patients?
First, as part of the Kidney Research Network, we are launching the second phase of a quality improvement project to encourage mental health screening annually in patients with glomerular kidney disease. Second, we encourage the integration of mental health screening into practice and prompt referral to mental health care specialists when needed.
With regards to patients living with glomerular disease, what are your next research projects?
The Kidney Research Network’s mission is to improve evidence-based treatment options and optimize health outcomes for patients with glomerular diseases. We have many projects that are ongoing to advance this mission. Visit the Kidney Research Network website to learn more!
Thank you very much for your time and your insight.
With the COVID-19 pandemic entering its third year and people being more aware and worried about their immune system, we turned to Emilia Vassilopoulou. She is Assistant Professor of Diet and Nutrition, Clinical Dietitian-Nutritionist and Psychologist at the International Hellenic University in Thessaloniki, Greece, and a pro to ask for advice on how to boost your immune system.
What are the top foods to boost your immune system?
Originating from a Mediterranean area, our field is a thesaurus of immune boosters. Oregano, thyme, cinnamon and other herbs and spices should be included during our cooking preparations instead of salt, fat or sugar. Definitely, fish and seafood are at the top of the list, as they are shown to have a strong anti-inflammatory effect in both acute infections and chronic non-communicable diseases.
Fresh seasonal fruits, which are rich in micronutrients and fiber, strengthen our immune response against viral infections and reduce the risk of complications upon infection. As such, whole-grain products and naturally fermented products such as kefir, natural yogurt and raisins enhance the immune defense system through a healthier microbiome.
Unsalted nuts combined with dry fruits are the ultimate couple for energy and avoidance of incessant snacking, which is relevant to unhealthy weight and reduced immune support.
“Fish and seafood are at the top of the list, followed by fresh seasonal fruits, whole whole-grain products and naturally fermented products.”
What is your personal go-to when you feel a cold coming?
When I feel a cold is coming, I keep my nasal mucosa clean with frequent rinses with an isotonic saline solution. I certainly remain active and hydrated by drinking a lot of water and sugar/caffeine-free warm herbals. My meals remain light, and usually I increase fruit intake.
What do you do to help your body fight the current pandemic?
The side effects of the pandemic are not limited to the ones infected; we are all suffering from the consequences, for both our somatic and mental health. Therefore, during the pandemic, I remained faithful to the principles of a balanced diet as well as home-made meals to safeguard both variety and good taste. Also, I exercised on a daily basis; due to the quarantine there were limited options although I found the one most appropriate for me and kept my body strong and flexible and my mind relaxed.
“During the pandemic, I remained faithful to the principles of a balanced diet. Also, I exercised on a daily basis.”
Do you recommend dietary supplements? If yes, which ones do you consider helpful? If no, why?
Dietary supplements can be helpful, mainly in cases where a balanced diet cannot be guaranteed. For example, vitamin D in the first months of life has been proven to enhance immune and bone health in infants. Folic acid is essential during pregnancy, and iron supplements can cure iron-deficiency anemia.
Also, in the incidence of acute infections, vitamin C, zinc and vitamin D might be protective against serious complications. So, although they cannot substitute a balanced diet, dietary supplements can be beneficial.
“Dietary supplements can be helpful.”
What role does mental health play in supporting and/or restoring your immune system?
As a clinical nutritionist and psychologist, I can reassure you that our brain can affect our body’s immune response. Nutritional psychiatry and neurology are among my research interests. There is an abundance of recent literature on the exponential role of dietary effects, through the gut-brain axis, for our mental health. Certainly, there are more foods apart from chocolate that are good for mental health. To start with, good sources of omega-3 fatty acids such as fish, flax seeds, chia, walnuts, guavas, mangos and berries modulate inflammatory processes and their direct effects on neuronal membrane fluidity and receptor function. Moreover, monounsaturated fats such as olive oil and avocado have been linked to reduced incidence of dementia and improved memory performance.
Foods rich in tryptophan, which is a serotonin precursor, have been shown to improve social interactions, decrease aggression and dominant behavior. Serotonin is important for both mood regulation and regulation of cognitive functions. Apart from chocolate, dairy products, chicken, oats and nuts are good sources of tryptophan.
Furthermore, whole-grain products and a variety of seasonal fruits and vegetables as well as dried fruit enhance mental health due to their high antioxidant, anti-inflammatory activity.
“There is an abundance of recent literature on the exponential role of dietary effects, through the gut-brain axis, for our mental health.”
Apart from food, what other immune boosters do you recommend?
- Remain active: Regular physical activity can improve your muscle strength and boost your endurance. Oxygen and nutrients are delivered to the body tissues and help the cardiovascular and respiratory system work more efficiently. Everybody can identify their favorite exercise to keep their body in action
- Frequent exposure to nature: Enhances positive emotions and contributes to physical wellbeing, reducing blood pressure, heart rate, muscle tension, the production of stress hormones, benefits immune response and may even reduce mortality.
- Actively cultivating positive emotions: When facing a stressful situation, actively cultivating positive emotions regulate immune response and counter depression. Studies have shown an indisputable link between having a positive outlook and cardiovascular, immune and metabolic response.
- Have a healthy self-esteem, self-worth, self-concept: These three psychological senses are important for our psychological immune system, which conserves our personal, familial and social well-being. Having self-acceptance facilitates our relationships with ourselves and others, reduces stress levels and enhances our immune system.
Many thanks for the interview!
Green socks for women with ovarian cancer? What does this mean? Politicians from the left spectrum are referred to, rather pejoratively, as “red socks”. But what is the “Green Socks Campaign” all about? On the occasion of Ovarian Cancer Awareness Month in March we spoke with Andrea Krull, founder of the Verein für Gynäkologische Krebserkrankungen Deutschland e.V. / Schwerpunkt Eierstockkrebs (Association for Gynecological Cancers Germany / Focus: Ovarian Cancer) and initiator of this project.
Ms. Krull, what prompted you to become involved with the topic of ovarian cancer, and how did the association come about?
Back then, I had founded the first self-help groups in Kiel, Hannover and Hamburg; a choir and other self-help groups were in the pipeline. So, I decided to form an umbrella organization to better coordinate and professionalize all these projects. Besides, nothing like this existed at the time, and I felt that there was a need for a reliable point of contact for women with ovarian cancer. So, it made sense to create an association that would take care of the women’s concerns and needs and reflect the patients’ side.
The spectrum of your services includes information on hospitals, therapy options and medications, but you also cover self-help and self-care. What is the goal of the association?
It is about providing a platform for women, to improve things, to communicate with doctors, to impart knowledge and know-how. I wanted things to get better, because to be honest, the situation at that time before the association was created was not good for us women. Everything was lacking. Since ovarian cancer is a serious and complex disease with various challenges and multiple prospects, I wanted to bring everything together and help to build transparency. My aim has been to give women knowledge and to empower them. We advocate for our side while striving to understand the side of health care professionals.
The “Green Socks Campaign” (source: Andrea Krull / www.eskd.de)
How did you come up with the idea for the “Green Socks Campaign”?
It all started when a very good friend of mine was also diagnosed with ovarian cancer. Due to surgery and chemotherapy as well as during her relapse she often felt cold. I asked her at the time what her favorite color was, and she responded “green”.
So, I started knitting her beautiful, warm, green socks. As the knitting took longer and many things came in between, I unfortunately was not able to give the socks to my friend, because she passed away in June 2016.
Every time I myself put on these socks in memory of her, I think intensely of my friend. I am still very sad that I did not manage to give the socks to her, although I looked after her closely at the time and accompanied her throughout.
Then one day I had an idea. “The Heart Pillow Project” for women with breast cancer made me wonder what I could do for women with ovarian cancer. What would help them? What would be a nice and “warm” way to convey information about ovarian cancer? How could doctors and nurses help and support? What was reasonable, feasible, and would attract attention?
And suddenly it came to me: green socks, naturally! Green stands for hope. Green socks would be the perfect vehicle for hope and information. So, the “Green Socks Campaign” was born.
In October 2019 I called for the donation of green socks on Facebook. The response was incredible! By December 2018 we had already received over 1,000 pairs of green socks, and a great number of clinics had contacted us to join in and distribute the socks to women with ovarian cancer. We had over 30,000 clicks in one week and hundreds of mail requests. You can follow the whole story on Facebook and Instagram. There you can find videos, articles, facts and figures. A huge thank you to everyone who helped, knitted, donated, and supported us.
This campaign is a huge success! I am proud that I had this idea back then, because in the meantime thousands of women have received more information about ovarian cancer through the “Green Socks Campaign” which results in them making better and more informed therapy decisions.
The “Green Socks Campaign” (source: Andrea Krull / www.eskd.de)
Is this campaign limited to Germany or does this project already exist in other countries?
Miraculously, the “Green Socks Campaign” was launched in Austria on December 6, 2021. We are planning to introduce this campaign to Switzerland next; other countries are to follow. Therefore, we are now looking for volunteers who would like to implement our idea in their country. Our group is happy to help and give support during the start-up phase. Just get in touch with us.
What does the national and international network of your association look like? With whom do you cooperate in the fight against gynecological cancers?
We are very well networked and collaborate with many international initiatives on gynecological cancers, like World Ovarian Cancer Coalition, ESGO Patient Advocacy (European Society of Gynaecological Oncology), all European patient advocacy groups for gynecological-oncological diseases, and the associated experts and hospitals.
What is your expectation from science and politics regarding the fight against ovarian cancer or gynecological cancers in general?
I wish that this disease could be detected earlier. Gynecologists and family doctors need to be more aware of this disease when they face unspecific symptoms in women. Also, better information about treatment and therapy needs to be provided, and women need to have a reliable and safe network of information and care when they fall ill.
I would also like to see more support and appreciation for the work of volunteers. Without the help and commitment of devoted volunteers, many services would cease to exist, and the comprehensive supply of information would no longer be available. Therefore, politics must strengthen the work of volunteers, and sustain self-help groups. We all burn for “our cause”, but we shouldn’t burn out. I would be happy to elaborate these thoughts and present them in detail to politicians and decision makers.
Thank you very much for this interview!
During the COVID-19 pandemic hospitals and healthcare institutions as well as patients and their supporters have been forced to employ new routines to ensure safe care. Increased hygiene and safety measures now include testing, social distancing, and wearing masks. Hence, telehealth is expanding. Although telemedicine has been used for decades in different domains, we now see a general uptake and innovative ways how telehealth is being employed.
In the field of nutrition, telehealth-based interventions (e.g., for promoting diet changes and body mass index reductions) have already been applied successfully. So, will tele-counselling sessions in nutrition emerge as an alternative to in-person counselling? We spoke with Sandra Arévalo, a Registered Dietitian Nutritionist (RDN) and a spokesperson for the Academy of Nutrition and Dietetics, about the impact of telehealth in nutrition. The following responses are specific to her and her team in particular. For information about telehealth in general, please go to the website of the Academy of Nutrition and Dietetics.
Please note that March is National Nutrition Month®. This is an annual campaign created by the Academy of Nutrition and Dietetics. During the month of March, everyone is invited to learn about making informed food choices and developing healthful eating and physical activity habits.
What kind of applications do you see for telehealth in medicine, especially in the field of nutrition?
We use Zoom and the phone but there are a number of apps and telehealth platforms that registered dietitian nutritionists use to communicate with their clients.
What are the benefits of telehealth for patients?
There is no commuting needed which saves time and money. For those at work, they don’t need to take time off. If there is no registered dietitian nutritionist close to you, it’s easier to access one via telehealth.
Can you describe the current uses of telehealth by Registered Dietitian Nutritionists (RDNs)?
My particular group of RDNs do nutrition and diabetes education 1:1 via Zoom. We do diabetes self-management education as well as diabetes prevention, facilitate support groups and conduct food demos. Telehealth makes it possible to provide a variety of services to clients.
What do you see as barriers for a successful telehealth implementation?
Our team makes sure to work with IT to be able to comply with the Health Insurance Portability and Accountability Act (HIPAA). They also make sure they have a private space to work to protect the privacy of their patients. You also have to make sure your patients understand the technology to have a successful session.
What needs to be done in order to overcome these barriers?
You have to make sure that you work with IT to establish some security systems that protect your telehealth system from hacking. You may need to pay for a subscription because usually the free versions of platforms aren’t secured.
What is your vision for the future of telehealth with regards to the field of nutrition?
Telehealth is here to stay. Our numbers have increased since we started seeing patients via telehealth. Patients are also happier because it’s more convenient to them. In our case, our only disadvantage is that we can’t check your patient anthropometrics, but they can be reported by the patient when necessary. While this is a disadvantage for our team, at the same time it also empowers patients to own their journey in their way to practice healthful habits because they are held responsible for their health outcomes.
Thank you very much for your time and your insight.
On the occasion of this year’s World Obesity Day (March 4, 2022) we spoke with Vicki Mooney, patient advocate and Executive Director of the European Coalition for People Living with Obesity (ECPO). ECPO is working collaboratively across Europe to improve the lives of people who are living with and are affected by the chronic disease of obesity through advocacy, policy and education.
Note: The statements and opinions contained in the video and podcast episode are solely those of the speaker.
International Childhood Cancer Day (ICCD), which is held on February 15 each year, is a worldwide collaborative campaign in order to raise awareness about childhood cancer and to show support for children and adolescents with cancer, the survivors, and their families.
On the occasion of this year’s ICCD, we spoke with Grit Brunner. She created both the text and the illustrations for a picture book on childhood leukemia as part of her school leaving examination in 2021. With her book “Does a Monster East My Hair?”, Grit Brunner offers a helping hand to little patients and their supporters while facing the challenges of diagnosis and treatment. The picture book was originally published in German in September 2021 and has meanwhile been translated into English, Spanish, and French.
You originally wrote and illustrated the picture book as your school leaving thesis (“Matura”). How did you come up with this topic? What was your motivation to write such a book?
I started thinking about the topic of my thesis very early on. In the process, I realized that I wanted to do something creative and something medical. A picture book on the subject of childhood leukemia is a good way to combine both aspects. In addition, I would like to use this book to help people affected by the disease to come to terms with it.
It feels great to see the book printed. However, it still feels unreal so far. I never imagined that my picture book would be found on the shelves of bookstores, private homes or, for example, hospital libraries. So far, I have received a lot of positive feedback from doctors and support group staff.
How did you go about it? Where did you start? How did you find your style?
I systematically researched and read extensive literature on leukemia and creating picture books to give me a good knowledge base. I also looked at picture books on all kinds of topics for creative inspiration.
At the beginning, I came up with a rough plot outline. Based on that, I wrote the story and illustrated it. Throughout the process, I kept adjusting and revising the images and text. I think everyone of us has their own style, and it’s not the first time I painted something. After a few sketches, I got into it and found my style.
How did you learn about the disease, and how did you ensure that your book is medically accurate?
Mainly through medical books, but also on the Internet, such as the Swiss Cancer League (“Krebsliga”) website. I read a lot of reference books about leukemia and summarized the relevant basics about this disease, including diagnosis and treatment, in an additional theory section of my thesis. In addition, I exchanged ideas with my father, who is a medical doctor.
How did you develop the leading character? Did you know from the beginning what she looks like, what she does, what kind of character she has?
At the beginning I only thought about a rough plot. Only during the actual writing did her character develop. Before I created the final illustrations, I tried out various ideas. Finally, the girl developed from these sketches.
Why was it important to you to tell this story?
Childhood leukemia is the most common oncological disease in children up to the age of 15. The sick child, the siblings, the parents and the general environment are exposed to great physical and psychological stress. In addition, there are not many picture books about leukemia in which the child itself is ill. It is important that children understand their disease and know what is happening to them. When you explain a disease to a child you must not trigger fear, but rather give courage and confidence in an evidence-based and empathetic manner.
Who do you think should read the book? Who is your story aimed at?
The illness affects not only the sick child, but also the environment. Life changes abruptly, and parents in particular are very worried about their child. Siblings are sometimes afraid of being blamed for the illness, for example, because they have teased their sister or brother. Often the parents worry so much about the sick child that they have less time for the others. This makes the siblings sad. Therefore, it is important that they understand why their parents are sad and spend less time with them.
Author of children’s books or doctor? What does your professional future look like?
If everything works out, I will study medicine. Creating picture books gives me a lot of pleasure, but I want it to remain a hobby. I don’t plan to write another book at the moment, but maybe there will be a suitable time to create another one in the future.
Many thanks for your time and for the interview.
World Cancer Day is an initiative of the Union for International Cancer Control (UICC) and came to life on February 4, 2000 at the “World Summit Against Cancer for the New Millennium” in Paris. The core belief of the organizers of World Cancer Day is that access to life-saving cancer diagnosis, treatment and care should be equitable for all – no matter where you live, what your income, your ethnicity or gender. They think that governments must be accountable and national leadership on policies, legislations, investment and innovation is key to accelerated progress.
We spoke to Dr Cary Adams, CEO of UICC.
Note: The statements and opinions contained in the video and podcast episode are solely those of the speaker.
During 2019 and 2020, the World Health Organization’s (WHO) Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed. The core of the strategy is the interruption of transmission and the elimination of disease. Meanwhile, the COVID-19 pandemic seems to overshadow all other health problems, with scientists predominantly working on vaccines and cures for the virus.
On the occasion of World Leprosy Day on January 30 we talked to Dr Vivek V. Pai, a longtime expert on leprosy. He is the Director of the Bombay Leprosy Project and is fighting to keep leprosy on the agenda while drawing attention to the effects of this devastating disease.
Dr Pai, how many people are suffering from leprosy in India?
In India and the rest of the world, there has been a tremendous decline in the number of leprosy patients over the past four decades. However, one of the major challenges faced by India is the continued occurrence of new leprosy cases, evidenced by almost a static new case detection rate (NCDR) over the past decade. According to the report of the national sample survey and situational analysis done in 2015 by the National Leprosy Eradication programme (NLEP) India, the major issues to be addressed by the program were:
- delay in case detection,
- hidden caseloads,
- low awareness regarding leprosy in the community and
- the lack of quality monitoring.
These effects can be evidenced by the WHO’s weekly epidemiological report of 2019, which mentions that out of 202,488 new cases reported globally, 114,451 (57%) were contributed by India. In addition, in India, there are more than 3 million people with leprosy deformities needing attention and care for lifelong rehabilitation services.
“One of the major challenges faced by India is the continued occurrence of new leprosy cases.”
The WHO has drawn up a strategical road map from the year 2021 to 2030, focussing on a “zero leprosy” target. In 2020, although the prevalence of leprosy has gone down to 0.22 / 10,000 worldwide and to 0.66 /10,000 population in India, a total number of 202,488 new leprosy cases including 14,981 child leprosy cases were detected in the world.
India is still housing 114,451 (57%) of the new cases of the world. These data clearly indicate that despite the continuation of effective chemotherapeutic measures with multidrug therapy (MDT) for more than 4 decades, the transmission of the disease is continuing in the community. Leprosy being a chronic disease with a known long period of incubation (up to 20 years and more), a total elimination programme with a “zero leprosy” target may be too optimistic.
In 2020, the National Leprosy Eradication programme (NLEP) has revised its goals as follows and set annual targets:
- To reduce the prevalence rate to less than 1/10,000 population.
- To reduce grade II disability <1% among new cases at the national level.
- To reduce grade II disability cases <1 case per million population at the national level.
- Zero disabilities among new paediatric cases.
- Zero stigma and discrimination against persons affected by leprosy.
The key strategy to break the chain of transmission is to detect early the infectious type of leprosy cases, which is more difficult and challenging in the integrated setting.
Can you describe how leprosy damages the health, existence and prospects of those affected?
Even after medical treatment to cure the disease, many leprosy patients are left with visible deformities in/on the hands, feet and eyes, with wounds in the skin and amputated limbs. These patients require sustained disability care and services by way of physiotherapy and protective aids and appliances such as splints and special (i.e. micro-cellular rubber (MCR)) footwear to overcome the effects of disabilities and to prevent further worsening of the disabilities.
During and also after treatment some of the patients suffer from recurrent or chronic erythema nodosum leprosum (ENL) reaction/neuritis. This is an immune-based reaction which is extremely painful and debilitating, affecting the quality of life including the livelihood. These patients need additional medical management along with supportive measures to control the reaction and prevent the morbidity arising out of the disease in the community. Moreover, the deep-rooted stigma of leprosy still exists in the communities. It has been an underlying cause of social inequities faced by the people affected with leprosy, which in turn has been threatening their health, existence, prospects and livelihood.
“The deep-rooted stigma of leprosy still exists in the communities.”
What is done with regard to prevention, diagnosis, treatment and support – both physically and mentally?
Clinical diagnosis for identifying the cardinal signs remains the mainstay and is supported by skin smear. A skin test called skin smear is the only important tool to confirm and diagnose persons with the infectious type of leprosy. Upon confirmation of the diagnosis, the patients are started on WHO multidrug therapy blister-calendar packs for 6 months in paucibacillary (tuberculoid) leprosy and for 12 months in multibacillary leprosy. These drugs are provided free of cost by the WHO and the government.
Counselling, educating and reassurance of the patients on curing of the disease plays an important role to make them aware of the disease, of treatment adherence and compliance for completion of treatment. It underlines the importance of reporting back to the referral centres or clinics if there is aggravation of the disease or nerve pain or signs of nerve function impairment. This should happen early enough to get the condition examined and confirmed for reaction/neuritis, so that necessary treatment interventions can be started timely.
It is also important that post completion of treatment (i.e. released from treatment (RFT)), patients are to be followed up for identifying clinical events like reactions, nerve damage, disability and relapses of the disease as part of surveillance measures. For prevention of the disease, examination of all household contacts is done, and eligible contacts are given a single dose of rifampicin (SDR) chemoprophylaxis and are being observed.
“Counselling, educating and reassurance of the patients on curing of the disease plays an important role.”
How does the COVID-19 pandemic affect people diagnosed with leprosy?
The COVID-19 pandemic has impacted all health programs, and leprosy is no exception. The reallocation of staff and resources to limit the pandemic and the travel restrictions imposed have definitely affected the leprosy program. Nonetheless, efforts are made to reorient the leprosy program for active case detection and surveillance including drug delivery to patients and to overcome these temporary hardships to reach the desired goal of leprosy-free India. New case detection has dropped, while interruption of the treatment and follow-up,, compliance with treatment, identification of clinical problems and their management, as well as community programmes are all affected.
“The COVID-19 pandemic has impacted all health programs, and leprosy is no exception.”
In the current situation, what is done to implement the WHO strategy of “zero leprosy”?
The present global WHO strategy for 2021–2030 mentions that it plans to implement integrated, country-owned zero leprosy roadmaps for all endemic countries. This provides an opportunity for countries like India to choose strategies and remedies best required for it.
This WHO strategy, which was developed through a consultative process with all major stakeholders, reflects these epidemiological changes. Whereas previous strategies focused on the “elimination of leprosy as a public health problem” (defined as less than one case on treatment per 10,000 population), the new strategy focuses on interrupting transmission and achieving zero local cases. In doing so, the strategy aims to motivate high-burden countries like India and Brazil to accelerate activities while compelling low-burden countries to complete the unfinished task of making leprosy history.
Thank you very much for the interview and your insight.
The thyroid gland plays a vital role in the body. Thyroid disorders, whether temporary or permanent, which affect about one in 20 people, should be taken seriously. As the small, butterfly-shaped gland at the front of the neck impacts the overall health, it is important to diagnose and treat thyroid disorders accordingly.
Ashok Bhaseen from the Thyroid Federation International is a keen advocate for thyroid health. We spoke with him to draw attention to Thyroid Disease Awareness Month which is in January.
Note: The statements and opinions contained in this video are solely those of the speaker.
Susanne Meister has been working for Karger Publishers in different roles for more than 20 years. She read German literature and history at the University of Freiburg. After positions in different publishing houses and an employment in England she started her career at Karger Publishers where she supervised several scientific journals. Since 2019 she is working in the unit Healthcare Markets (HCM) as Manager Healthcare Publications. Together with her team she oversaw the revision of the website Embarrassing Problems and launched “The Waiting Room”. Susanne is keen on learning and likes to edit and impart knowledge. In her spare time, she loves travelling, reading, yoga and cooking.
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)
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!
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.
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.
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!
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!
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!