Scleroderma, meaning “hard skin” in Greek, is a rare autoimmune condition that causes skin and tissue to thicken and become stiff and tight. In more severe cases, other organs like the heart and lungs can also be affected. Scleroderma Awareness Month is held every June while June 29 is World Scleroderma Day – these provide valuable opportunities to raise awareness of this condition. World Scleroderma Day is held in memory of Swiss artist Paul Klee, who lived with and was strongly influenced by systemic scleroderma, and who died on June 29, 1940.
Of note, Raynaud’s phenomenon is often a common symptom of both types of scleroderma, i.e. localized (affecting only certain parts of the body) and systemic scleroderma, which affects the whole body.
On the occasion of both Scleroderma Awareness Month and World Scleroderma Day we spoke with Sue Farrington, CEO of Scleroderma & Raynaud’s UK (SRUK).
In scleroderma, no two patients are truly alike. Why?
Scleroderma is a rare autoimmune condition that affects around 19,000 people in the UK and 2.5 million worldwide. Everyone’s experience of scleroderma depends on what type they have, how severe it is, and what parts of their body are affected.
Scleroderma occurs when the immune system becomes overactive and starts to attack healthy tissue in the body, causing hardening of the skin and affecting joints and, in more severe cases, internal organs. Scleroderma can also cause scarring that can stop parts of the body from functioning properly.
There are two main types of scleroderma: localised and systemic sclerosis. Localised scleroderma only affects the skin whereas systemic sclerosis is more severe and can affect other organs such as the heart, lungs and digestive system. In the most serious cases it can be life-threatening.
This is why it’s vital that people with the condition receive good information, support and care tailored to their own condition and experience.
“Scleroderma occurs when the immune system becomes overactive and starts to attack healthy tissue in the body.”
On your website, the motto “#KnowScleroderma – Educate, Engage, Empower” is given. Why are these pillars important?
As scleroderma is a relatively rare condition, public awareness is low. Many people don’t know the signs and symptoms to look out for, what to expect once they’ve been diagnosed, what treatments are available or how the condition could affect them in the future.
Scleroderma may be uncommon, but it can be a life-changing condition for many, so it’s crucial that everyone gets the information and support they need to continue to live well and help them make informed decisions about their care.
As a charity dedicated to supporting people with scleroderma, SRUK seeks to
- educate the public by raising awareness of the signs and symptoms
- engage with people through our Helpline, website, webinars and other online activity so they can access information and support, and
- empower those who are concerned to seek a diagnosis, ask questions and self-manage their condition better.
“Scleroderma may be uncommon, but it can be a life-changing condition for many.”
What is vital for the (timely) diagnosis and treatment of patients with scleroderma?
Early diagnosis and treatment of scleroderma cannot be underestimated. The condition often affects the body before symptoms appear, and any damage to the body that occurs before treatment starts is irreversible.
However, for many people it can take up to five years on average to receive a diagnosis. This is largely due to a general lack of awareness of scleroderma among healthcare professionals, inconsistent access to specialist care and problems with the coordination of care across different healthcare teams.
We are working to close this gap by funding research to improve diagnosis as well as treatments and quality of life for those with scleroderma. We also engage with leading healthcare professionals to share information, advice and best practice to the wider workforce.
“Early diagnosis and treatment of scleroderma cannot be underestimated.”
What can patients, their caregivers and their loved ones do when they are or someone close is living with scleroderma, for example regarding their quality of life?
Once someone has received a diagnosis of scleroderma, the first thing I would recommend is not to search for information on the internet. Not all information online is accurate, and it can do more harm than good.
For reliable and trusted information about scleroderma, visit our website. You will be able to find out more about how the condition is monitored, how it can affect the body and the treatments available. There is also a section to help people manage their condition, including the importance of a healthy diet and getting enough sleep.
Scleroderma can affect both adults and children and due to the nature of the condition, it’s important that others are aware of the impact it can have, both physically and emotionally.
With this in mind, we have produced helpful guidance for both schools and employers to help them understand what scleroderma is, how it can affect people at school or at work, and what their responsibilities towards their students or colleagues are. These can be downloaded here.
What are your plans for the upcoming Scleroderma Awareness Month as well as World Scleroderma Day on June 29?
During Scleroderma Awareness Month, we will be raising awareness by sharing stories from people who are living with the condition or have loved ones with scleroderma. We have some very moving and inspirational stories from our community, which we will be sharing across traditional and social media.
We will also be encouraging the public to support us by getting involved with the SRUK Walk – a month-long fundraising campaign where we ask people to organise a walk and raise funds. It’s their walk, their way, to help us make a difference to everyone living with scleroderma and Raynaud’s. You can find out more by visiting our website.
Many thanks for your time and for the interview.