I remember sitting on my dad's lap when I was five, and he called my mother into the room to look at my left leg where the skin had become very tight and oddly textured. A trip to my pediatrician left my parents in search of a second opinion, because there was no way that what was happening to me was simply the result of growing too fast. It is a little hard to remember all the details considering I was only five years old. Regardless, I was diagnosed with morphea scleroderma.
I was told it was a disease that was very rare in elderly people and even more so in children. I also remember something about calcium and my lack of drinking enough milk.
My leg continued to become tighter and discolored. I remember a lot of hospital visits and one story about a girl, a few years older than me, who had it under her armpit area. Unfortunately for her, it was spreading pretty fast.
Even though I was unfortunate enough to get scleroderma, I found it hard to feel too bad about it. I knew from the beginning it could have been a lot worse. I do not remember being in much pain, and I have always lived an athletic, tomboy lifestyle.
The discoloration and texture traveled the length of my inner left leg, which is a quarter of an inch skinnier than my right. My knee is very thin and pretty much just bone. I have not been inhibited in any way. I have played soccer for the last twelve years and was certainly considered one of the top athletes of my grade.
As far as I am concerned, the worst part of living with scleroderma was the awful tasting medicine I had to take when I was five. I have had to master the art of disguise and avoid wearing shorts. I am still not comfortable with the scar, but I have been free of scleroderma symptoms for quite some time. I know that I am a lucky one. It could have been a lot worse.
Email: [email protected]
Story posted 5-15-01
Story edited VH1: JTD 9-8-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Voices of Scleroderma Volume 1
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