Hello, my name is Kathy. I am a forty-seven-year-old white female. I was diagnosed with Focal or Localized Scleroderma (Juvenile Scleroderma) at the age of eighteen months.
I spent a lot of my young life at the Children's Clinic at Vanderbilt Hospital in Nashville, Tennessee. I do not remember any of my treatment, but do have a report of my case that was included in The Journal of Pediatrics in March 1962.
Surgeries and skin grafts were done to loosen the tightness of the skin when I was very small. The disease affected the right side of my body and while I was young, I was fitted with a special shoe, to lengthen my right leg in order for me to walk at a level pace.
I was terrorized by other children at school making stupid childish remarks, so eventually I stopped wearing the shoe to avoid the harassment.
I married at the age of sixteen, and had my first child at the age of seventeen. I have two of the healthiest children that anyone could ever wish for. I am still married to the same man after thirty one years.
I just lost my wonderful mother in 2001, and until now, I never even thought of asking more questions of the past. I want to talk to more people about this disease and learn more about it.
Kathy P. New email address needed 08-06-09 SLE Old Email Prefix: maypar Story submitted 10-31-02 Story posted 11-8-02 Story Artist: Shelley Ensz Story Editor: Judith Devlin |
LINKS Juvenile Scleroderma Localized Scleroderma |
Judith 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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