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Kathy P: Localized Scleroderma
I spent a lot of my young life at the Children's Clinic
at Vanderbilt Hospital in Nashville, Tennessee

Butterflys for Kathy by Shelley Ensz 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.

To Contact the Author
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
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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Go to Kathy R: Localized Scleroderma
 
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