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Deedra: Linear Scleroderma

I just recently found out my great, great grandmother from that same side of the family died from "Stone."

I developed linear scleroderma in 1987 when I was six years old. I had developed a white spot on the left side of my left leg, around my knee, that began to spread. During this time I was living in Massachusetts and went to every well known specialist, only to come away with being diagnosed with everything from lupus to arthritis. The most I remember from those years was my family having a big benefit for me to raise money to fund medical costs and research.

The winter time was very hard for me also. My leg would cramp up real bad and I could not walk. In the course of two years the scleroderma spread from under my knee to the top of my thigh.

My mother found out about a top specialist in Miami and he was the one that finally diagnosed me correctly when I was eight years old. Since there was not a whole lot of knowledge about my condition back then, I never went on any medication to put me in remission. The specialist recommended that we move to a warmer climate, so we moved to Florida and I have been in remission ever since.

Around five years ago my great aunt Maggie developed Diffuse Scleroderma and I just recently found out my great, great grandmother from that same side of the family died from "Stone." We're guessing that was what scleroderma was called back then. Judging by my family history I am pretty positive it is very much hereditary.

I am now twenty-five years old and have had no scleroderma related problems. I lay out in the sun a lot, drink, eat junk, and work out. Both my legs are the same size, but no fat grows on the left side of my leg. It is not as hard as it used to be and over the years it has faded and is not as burned looking.

I recently told my boyfriend of my condition, and when I could not answer any of his questions I finally came to terms with the reality of my condition and would like to learn from others living with this condition.

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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.