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Rhea: Morphea Scleroderma
Though it may break my body, it will never break my spirit.

Petunia for Rhea by Shelley Ensz 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.

To Contact the Author
Rhea
(Email address withheld)
Story submitted 5-15-02
Story posted 5-25-02

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Juvenile Scleroderma
Linear Scleroderma
Morphea Scleroderma
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 Rhonda L: Systemic Scleroderma
 
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