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Krys: Morphea Scleroderma

"She's just growing too fast!"

[Daisies] 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.

To Contact the Author

Email: [email protected]
Story posted 5-15-01
Story edited VH1: JTD 9-8-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Juvenile Scleroderma
Morphea Scleroderma
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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