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Janie: Morphea

My name is Janie. I am twenty-eight years old and was diagnosed with morphea on April 14, 2005.

I was about seven months pregnant when I first saw the spot. I, just like everyone else, thought it was a bruise. They tried to send me to a dermatologist, but I didn't think anything of it. Well, now I wish I did.

My daughter will be four years old in December, and the morphea has spread across my back and is traveling downward. And it scares me because the feeling I have on my back is weird. I feel a tightening, dull pain all the time.

I feel tired all the time, and everyone thought I was just lazy, but I would tell them I do not know why I am so tired. My doctor is giving me cortisone shots on the spots.

I wish I knew what I could do to help myself. I have a husband and fours kids. How is this going to affect them in the future? It scares me and I cry thinking about it.

The doctor I see told me that you could not get it through your genes, but my mother has it on her arm. So how is it not genetic? I want to know more.

My life has not been the same since I found out. My doctor told me to look it up on the internet. I do not want to look on the internet, I want someone to tell me where and how it happens to us.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

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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