Patients with Scleroderma are much more than their disease
FESCA, the Federation of European Scleroderma Associations, is ready to celebrate another World Scleroderma Day with a campaign to raise awareness of Scleroderma, also known as Systemic Sclerosis.
Scleroderma is a rare, chronic autoimmune rheumatic disease that affects the body by hardening connective tissue. Skin and internal organs can be damaged by this illness. It is life threatening and currently there is no cure. However, successful treatments are available for individual organs.
Early diagnosis is vital. If you experience reflux, have swollen puffy fingers and your hands change colour, don’t delay and contact your doctor! It can appear at any age, but it is more frequent in women between 30 and 50 years old.
“The lack of awareness and understanding across healthcare professionals has led to delayed diagnosis, which can have serious and potentially life-threatening consequences for people with Scleroderma. It is vital that people with Scleroderma are identified as early as possible, so they can receive the appropriate treatment and care “, said Sue Farrington, President of FESCA.
The theme of FESCAs awareness campaign of 2021 is recognising that the person with Scleroderma is so much more than the disease.
The slogan is “I AM MY PASSION NOT MY DISEASE! Scleroderma and COVID 19 will not take my smile!”
While it is vital that we increase knowledge about the condition, it is also important that we treat and understand the person not just the disease. The aim is to value as much as possible what each patient does in their life by showing their passion, by showing what makes them smile, fight, and overcome the disease.
“This is an illness that has necessarily guided their journey differently, but it is essential to value and focus on what is positive and to detach yourself from what cannot be done and always from a positive, constructive and even overcoming perspective,” said Helena Gaspar, patient from Portugal.
A video, and other graphic materials are part of our campaign and will be shared by 26 member associations in 20 countries to raise public awareness and understanding among national and international authorities and institutions.
Follow the campain on our social media platforms as the campaign will develop throughout June. Visit the official page here.
news & events
Are you living with diffuse scleroderma?
Would you like to be involved in a clinical study testing a new investigational drug for use in Diffuse Scleroderma?
If so, you may be eligible to take part in the DECODE Scleroderma Study
FESCA is proud to be a partner of a the new This is Living campaign launched last month by Boehringer Ingelheim.
We are happy to share with you our latest newsletter. Read about World Scleroderma Day 2021, projects, our next world congress and more.