World Scleroderma Awareness Day
Also known as
World Scleroderma Day
European Scleroderma Day (2009)
annually on June 29th (since 2009)
Federation of European Scleroderma Associations (FESCA) in January 2008
World Scleroderma Congress in February 2010
Systemic scleroderma, or systemic sclerosis, is a rare chronic disease of the immune system, blood vessels, and connective tissue, which it is estimated 2.5 million people have worldwide, with women being affected more than men. Symptoms vary, but it causes excessive deposits of collagen in the skin and other organs, both of which can be damaged from scarring and lack of blood supply. The skin may stiffen, impeding daily tasks, sometimes to the point of severe disability. The disease usually doesn't lead to death, but aggressive forms can be fatal. Early diagnosis is important to keep the worst complications from occurring. Systemic scleroderma is not contagious, infectious, or cancerous. Research thus far has brought about therapies and treatments, but there is no cure. The severity of systemic scleroderma, the lack of knowledge about it by the public, and the need for additional research illustrate why an awareness day devoted to it is vital.
European Scleroderma Day, created by the Federation of European Scleroderma Associations (FESCA) at a meeting held in January 2008, was observed on June 29, 2009. In February 2010, the first Systemic Sclerosis World Congress was held in Florence, Italy. Countries from all over the world took part, and it was agreed that the scleroderma awareness day would subsequently be celebrated all around the world. Hence, European Scleroderma Day became World Scleroderma Awareness Day. It was first observed on June 29, 2010.
World Scleroderma Awareness Day exists "to tell people, including the medical community, what it means to have this disabling disease," and 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." It is held on June 29th because Paul Klee, a Swiss artist whose painting was deeply influenced by his systemic scleroderma, passed away on the date in 1940.
How to Observe World Scleroderma Awareness Day
There are a few things you could do to observe the day:
- Learn more about systemic scleroderma.
- Share what you know about systemic scleroderma with others. You could accompany any online posts with the hashtag #WorldSclerodermaAwarenessDay.
- Donate to an organization that is taking on systemic scleroderma, such as the World Scleroderma Foundation, FESCA, or the Scleroderma Research Foundation, so that care and treatment for those who suffer from the disease can be expanded.
- Watch for systemic scleroderma symptoms. Raynaud's syndrome is one condition that should be monitored because it is a symptom of systemic scleroderma and may signal it. Another symptom is hard, puffy fingers. If both of these are present, you should get an ANA blood test. Then, a rheumatologist that understands the disease should make an examination.