The Scleroderma Framed foundation Stichting Scleroderma Framed is a Dutch scleroderma foundation that is represented by an enthusiastic group of over twenty volunteers, who joined forces to raise awareness of scleroderma among the public in a positive and artistic way. By taking portrait photos of people with scleroderma and exhibiting these photographs, we hope to reach a wider audience.
Jessica, founder of the Scleroderma Framed foundation
“When I was 28 years old, I was diagnosed with scleroderma. Scleroderma is a rare and serious rheumatic disease, which is caused by a defect in the immune system. To date, it has not been possible to find a cure for the disease. Because of the hardening of connective tissue in the skin and internal organs (such as the heart and lungs), the disease not only causes pain and disabilities, but can also develop into life threatening complications. Both health care professionals and the social environment of the individual affected are rather ignorant of the disease, and this is one of the reasons why the diagnosis is often made (too) late.”
This very ignorance of people’s social environments in particular inspired me to raise awareness of scleroderma among the public in a positive and artistic way. This led to the establishment of the Scleroderma Framed foundation. What just popped into my head during my stem cell transplant in 2006, has grown into a major photo exhibition, two books, national and international acclaim and a foundation staffed by 21 volunteers.
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