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Joyce R: Scleroderma En Coup de Sabre

Next week the spot was three times bigger!

I was just surfing the Internet when I found this page. I felt a great urge to contact other patients like myself.

When I was fifteen years old, somebody at school pointed out to me the fact that there was a white spot in the middle of my forehead, just below the hairline. I thought it was nothing, but then more people started to notice. I realized that this spot was actually growing. So I decided to go see my doctor, and he measured the spot. He told me to come back next week, to see if it was actually growing like I thought it was.

Next week the spot was three times bigger! My doctor sent me to a dermatologist, and the dermatologist took two skin samples. When I went back two weeks later, the dermatologist told me he was not sure what the spot was. He then let about six other doctors come in and look at me. Then the doctors debated for about a half hour and they told me it was scleroderma en coup de sabre. Unfortunately, they did not know anything about it so I looked it up on the internet. Not a good thing to do, especially not when the first stories you get to read are the ones about diffuse scleroderma. I totally panicked.

Luckily, a scleroderma group from California sent me a booklet, in which they explained my situation. I was so relieved.

I am twenty-two years old now, and the scleroderma is still there. I have a white stripe dividing my forehead into two parts, and I think there might be something growing next to it on the right side. I hope there are people that read this story before they jump to the wrong conclusions, like I did!

If you want to to contact me, feel free to do so.

With many thanks to all the people who have tried to put as much information out there as there is.

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!

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.