I was nine years old when I was diagnosed with scleroderma.
I'm now seventeen. It all began when I started getting what looked like bruises on my back. I could not explain where they came from when people asked me about them. My mother was afraid that people thought she was beating me.
When we went to my doctor to see about it, he said he had no clue as to what it could be. He immediately referred me to a dermatologist. To our amazement, she actually had answers. "You have scleroderma," she explained, and that although there were several types, she did not believe that the type I had was life-threatening. This is where all of the pinching and poking began. She needed samples of my blood and skin. To a nine-year-old little girl this was terrifying. I am now glad to say that I no longer have an aversion to needles.
When she pinpointed my diagnosis as morphea, we were all relieved, but still apprehensive. I was asked to try an experimental skin thinning medication, and now I wish I hadn't. The cream that I applied every night has warped the skin on my back. The biggest of the spots, which covers one fourth of my back, appears to be wavy. It is.
I have now gone through three dermatologists. Each sent me to the next when my condition progressed. The giant spot on my back started out as Morphea and then started gaining more qualities of Linear Scleroderma. I now see no one, I cope on my own. Whenever someone asks me about the "burn scars" or "birthmarks" on my arms or legs, I patiently explain about my disease, and let them know that even though it may break my body, it will never break my spirit.
(Email address withheld)
Story submitted 5-15-02
Story posted 5-25-02
Story Artist: Shelley Ensz
Story Editor: 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.