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 Scleroderma Awareness 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.

Why June 29th?

The gifted Swiss artist Paul Klee made painting his life’s work, but it was strongly influenced by his illness, systemic scleroderma. Paul Klee died June 29th, 1940.

The swiss Paul Klee Zentrum in Bern boasts the world’s most important collection of paintings, watercolours and drawings as well as archives and biographical material from all the creative periods of Paul Klee’s life which also can be visited through their website:

In February 2010 the 1st SYSTEMIC SCLEROSIS WORLD CONGRESS was held in Florence, Italy, with participants from countries from all over the world. At the world congress it was agreed that June 29th would be celebrated all over the world. Scleroderma day grew from zero to world scleroderma day in 2 years, and is celebrated in countries in Europe, Australia, Canada, Brazil, India and many more countries.

The first poster for Scleroderma Day
It was decided on the working meeting (Florance, 25-26 Jan, 2008) that launch of the EUROPEAN SCLERODERMA DAY will be on the 29th June, 2009.

Text on the poster said:
June 29: European Scleroderma Day
More Than Skin Deep

Scleroderma is the name given to a group of rare conditions that can damage the skin and internal organs through scarring and poor blood supply. A complex disease of the immune system, blood vessels, and connective tissue, it is hard to diagnose as its symptoms vary from person to person. But early diagnosis is critical to prevent the worst complications, and treatment is available. The Federation of European Scleroderma Associations (FESCA) believes that people with scleroderma should have equal access to treatments and care.

Very Early Diagnosis of Systemic Sclerosis (VEDOSS)
Scleroderma (Systemic Sclerosis) can be treated early only if diagnosed early. The VEDOSS project,
led by EUSTAR, calls for all GPs to refer people with two early symptoms to a rheumatologist for
further investigation. While Raynaud’s (lack of circulation in the fingers and toes when chilled,
leading to white, numb digits) is a common, mild condition, it may prove to be the precursor of
systemic scleroderma, and it is one of the symptoms that call for surveillance. A second symptom is hard puffy fingers. Where both symptoms are present, an ANA blood test should be conducted. Examination by a rheumatologist familiar with systemic sclerosis is the next step. This is best conducted in a specialist scleroderma clinic. Early diagnosis of scleroderma saves lives and leads to control of the disease.