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Lama: Morphea

"It felt great having someone know about it
and not think that it's a weird thing."

I never thought of sharing my story, but after reading the other stories I was really touched and got the courage to write about my own experience. I am twenty years old and I was only eighteen when the whole thing started. My mom noticed a small spot on my back, but we did not think it was anything important. But I was worried when it started getting larger and darker in color.

As would any eighteen-year-old girl, I hoped that it would not appear somewhere where other people might notice it. I got really worried when a similar spot appeared on my thigh and another one next to my knee.

I went to many doctors and I hated them all because I wanted to hear something positive and did not want to get disappointed. All the doctors told me that it's clear that what I have is Morphea. They did many tests to check that the Morphea would not develop into something major. They told me I do not need to worry a lot about it. I tried a lot of medicines but nothing worked. I got really depressed and could not talk about it to anyone. The only people who knew about it were my family. None of my friends ever saw the spots.

One of the things that I really worried about was my boyfriend. I was really terrified that he might get disgusted by the way the spots looked. One day when I was really depressed, I got the courage to tell him. I was shocked at how easy he took it. It felt great having someone know about it and not think that it's a weird thing. I know the spots are very noticeable but he acted as if they were invisible and he kept saying that no one would notice them. I know he was saying this because he wants to make me feel better and he did!

What I am trying to say is that I really got over my severe depression with help from my boyfriend. It makes me feel great to know that he wants to marry me and spend the rest of his life with me as if these spots weren't bothering him at all.

I would love to receive e-mail from anyone telling me about any treatment that showed some improvement. I will be very thankful. I really want to know about any treatment, because I still cry myself to sleep sometimes when I think about it. I worry all the time that a similar spot might appear on my face or on a place that I can't hide. Just thinking about that possibility depresses me. Thank you for reading my story.

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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!

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.