Welcome to My Personal Stepping Out to Cure Scleroderma Page!
I can't believe how my life has changed since I found the Heartland Chapter!!!
I am no longer alone!
I have a rare form of Localized Scleroderma that was diagnosed around age 7...that would be around 1959!
Did you know Localized Scleroderma is considered mostly cosmetic? BUT it can affect a person neurologically as well as interfere with mobility.
Localized scleroderma often starts in childhood and its VISIBLE DIFFERENCE can have a huge impact on our self esteem!
"En Coup de Sabre" (French for "slice of the sword"), is the brown line that runs down the middle and Left side of my forehead and into my scalp. I have TWO neurological movement disorders caused by En Coup de Sabre.
The National Scleroderma Foundation is supporting those of us with Localized Scleroderma with a "Localized Scleroderma Support Group". We meet via ZOOM every 3rd Tuesday of each Month. For more information you can contact
localizedsg@scleroderma.org
Unfortunately many other WARRIORS have systemic scleroderma and some are fighting for their lives
I decided in 2013 that I would do everything within my power to help raise awareness (no one should be alone), and to raise funds to educate, support, and to find a cure.
If you can't join me for the walk, donations are much appreciated. Please help find a cure for my scleroderma family and Me ...
Love, Hugs, Peace and Prayers
To learn more about the National Scleroderma Foundation, please visit scleroderma.org
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