It began when I was around eight. My parents noticed some roundish discolored spots on my back. I was taken to the doctor who believed the spots to be eczema. The spots then hardened and turned a silverish brown color. For a couple years I applied cortisone cream to the spots. Although they softened a bit, they did depress themselves and thinned out to the point where you can see the veins clearly through the skin.
I was finally sent to a dermatologist who could, at least, identify my condition as morphea but gave no hope of a cure. However, both doctors had such a laid back and lack of concern about the spots that it seemed that they would be no problem to me.
Now I am twenty-one years old. Although I have not had any kind of treatment since the spots occurred, other than a few cortisone creams, the spots have not changed and they still cause embarrassment and concern to me. I now suffer from fatigue and back pain, however, it is not suspected that they are caused by my condition. It is frustrating that there is such a lack of knowledge for this condition and that I have had to go through the last thirteen years with very little support from doctors. Even my parents now believe that there is nothing we can do and tell me to try not to worry about it. However, they cannot understand what it is like to have this disfigurement that no one can tell you anything about or relate to you about it.
I try not to let it bother me, and I have still been able to lead a fairly normal life so far, but I hope to find someone to relate to as well as someday to find a cure.
New email address needed 08-06-09 SLE
Old Email Prefix: lstellat
Story posted 12/31/03
ISN Senior Artist: Sherrill Knaggs
Story Editor V1: Judith Devlin
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.