Anja is the driving force behind Cure Scleroderma :
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To raise awareness of the disease, we take actions such as:
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Walk For Scleroderma.
Scleroderma is translated Scleroderma, which is an extremely rare incurable autoimmune disease, which affects 3000 people in Belgium.
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By organizing an annual Walking Tour and selling t-shirts, caps and support ribbons, we hope to raise awareness of this disease and increase funding for research.
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UZ Leuven
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All proceeds from the annual walking tour and sales go entirely to the Scleroderma research project, headed by Prof. dr. Dr. Ellen DeLanghe.
The idea
In 2017 I was diagnosed with Systemic Sclerosis.
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Due to red spots in my face, which I wanted to have lasered away at a dermatologist, I was advised to have blood drawn and to go to a Rheumatologist .... so said, done.
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I also had swollen, red, blue and white fingers for quite some time, read years, I blamed my chemotherapy that I had to undergo in 2007 to cure my breast cancer.
But no, I have Raynaud's Syndrome, a first symptom of Scleroderma and other additional complaints.
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After all kinds of other investigations, the diagnosis was made by Rheumatologist Dr. Jan Lenaerts.
Boom! Chips!
And now?
Don't give up, I told myself!
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I'm still doing relatively well and I like to walk, so I decided to bring this disease more into the light of day by organizing a walking tour for the research project in Leuven and that's how the idea for the rest started!
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NEVER LOSE HOPE!
Mary Vos
Chief Editor
Rare Disease Day
2022
Sanne Verhoef
Art Director
Fenne Jansen
Program Editor
