My parents always took me to doctors, when I lived back home in Nepal, since the first appearance of morphea. They just thought it was something that would go away in a couple of months or years, even. Having heard that, they never seemed to pay much attention to it. But as I got older, the scars did not disappear, but started getting bigger. It also caused problems with the way I walked and started disfiguring my legs and my arms. As a result, my left leg and my right hand are a little smaller than my other leg and hand. Besides that, I also recently got new scars around my waist and my breasts.
My parents took me to Japan and other countries to get good treatment. But no one seemed to have any answers for the behavior of those scars. When I finally came to Canada, I was diagnosed with morphea. As I was fourteen at that time, it did not bother me much. I was already used to the discoloration of my skin. I started becoming aware of it later on that year.
Now I feel really bad about it. I am seventeen and reading all these stories about death from scleroderma* and it really scares me. I know there is no cure for it. I am still under observation and have to go to the hospital every six months. This disease not only scarred me physically, but mentally too.
Nevertheless, I have started to accept my body. I feel like I am not the only one who does not understand this disease when I read through all these stories. A lot of them have touched me deeply. Even if I get the right treatment or not, I will not let this disease ruin my life.
Thanks for letting me share my story.
Morphea Scleroderma is never fatal, nor does it progress to a worse type of scleroderma. Pree is referring to those who have the systemic form of scleroderma.
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Story posted 8-27-02
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.