The first European Scleroderma Day on the 29th June 2009 was celebrated in almost all of our member countries as it was decided by the FESCA in a year ago. In order to find information about the local, national activities, please go to Member Organisation where you can find the website addresses of each and every member organisations and their activities on European Scleroderma Day. In our next news letter which is coming soon you will find reports about the national activities too.
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. In February 2010 the1ST 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.
Paul Klee died June 29, 1940
The gifted Swiss artist Paul Klee made painting his life’s work, but it was strongly influenced by his illness, systemic scleroderma, as the painting chosen for Scleroderma Day demonstrates.
Paul Klee (1879. – 1940.), swiss painter
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: www.zpk.org.
Scleroderma Awareness Day
On June 29 we celebrate the life and death of Paul Klee and all those who struggle with scleroderma.
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.
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.
It has been decided on the last working meeting (Florance, 25-26 Jan, 2008) that launch of the EUROPEAN SCLERODERMA DAY will be on the 29th June, 2009. Until that time preparations are made for the launch.
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.
The great Swiss artist Paul Klee died in 1940 of scleroderma, which strongly influenced his personal development and creative art.