Scleroderma is a chronic disease characterised by excessive deposits of collagen in the skin or other organs. The localized type of the disease, while disabling, tends not to be fatal. Diffuse scleroderma or systemic sclerosis, the generalized type of the disease, can be fatal as a result of heart, kidney, lung or intestinal damage.
What is scleroderma?
Scleroderma is a rare autoimmune disease that stiffens the skin, turning simple daily activities into real challenges. It can affect all organs in addition to the skin, and while treatments exist, there is currently no cure. More research is urgently needed.
Also known as Systemic Sclerosis, scleroderma is a chronic disease of the connective tissue, immune and vascular systems, and presents a major management problem for patients and their doctors. Early diagnosis is essential. New research has brought important improvements in therapies and care, so please join patient organisations and families as they spread awareness and support research.
An estimated 2.5 million individuals worldwide suffer from scleroderma – the majority being women of childbearing age. The cause of scleroderma is unknown and effective overall treatments are lacking, although there has been recent considerable progress.
Not all patients with scleroderma (systemic sclerosis) will suffer serious complications – no two patients are truly alike – but in its more aggressive form it is the most fatal of all the rheumatologic disorders.
What scleroderma is not
Scleroderma is not contagious, infectious, cancerous or malignant.
World Scleroderma Day
Having a disease that nobody has heard of is a lonely business. When even the doctors cannot recognise it, or tell you what is going to happen, it is lonelier still. So World Scleroderma Day was created to tell people, including the medical community, what it means to have this disabling disease. June 29 is a day to recognise the bravery of those who live with scleroderma, and to demand equal treatment and equal care for people with scleroderma across Europe.
Every year, on June 29, we campaign for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases.