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Tonya: Morphea Scleroderma

I left unhappy, but my mom was thrilled I did not have cancer.

Hi everyone. I am thirty years old and was diagnosed with morphea when I was either sixteen or seventeen. I went to the doctor originally because I noticed a white waxy lump on the back of my thigh. It did not hurt or itch but my mom worried about it.

The general practitioner did not know what to make of it so I was referred to a dermatologist. After a biopsy I was told I had morphea. The doctor basically handed me a medical book and said he had only seen one other person with it before. I was told that the cause was unknown and that there was nothing to be done about it but that it was not life-threatening and did not involve internal organs. I left unhappy, but my mom was thrilled I did not have cancer.

During the next few years I noticed more and more spots. I could tell that they were morphea too but they were different than the first one. They had no white center at all. Just brown spots that sunk below the level of my skin. The worst thing is that they look like bruises from a distance and several well-meaning but ignorant friends and family members have questioned whether or not I am a victim of domestic violence. This is completely unfair to my husband! (He is very understanding.) For this reason I won't wear anything that shows my back, which is where most of the spots are.

When I was twenty-eight I went to another dermatologist at a University Hospital here in North Carolina. After another biopsy and negative results for Lyme I was again told it was morphea and given hydrocortisone creme for any new spots. They said it won't prevent the scarring but will cause burn out quicker so the spots will be smaller. However, neither I nor my husband have found any new or active spots in years.

After doing some Internet research I realize that I am indeed one of the lucky ones (so far) and have not had any complications. It does make me feel a little less weird to know that I am not alone.

I have avoided the sun like the plague since my initial diagnosis and am wondering if it will help to hide the brown spots by tanning? Or will this only make it darker, or worse, bring on another attack? I would love to hear from anyone with a similar condition. God bless.

To Contact the Author

Tonya
Email: [email protected]
Story posted 5-22-01

Story Artist: Shelley Ensz
LINKS
Juvenile Scleroderma
Morphea Scleroderma

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!

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