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Tyler: Scleroderma, CREST Syndrome

It makes me feel like I am not a kid anymore because I cannot do what I used to do.

Hi my name is Tyler and I am fifteen years old. When I was thirteen I was diagnosed with scleroderma. It has changed my life. It makes me feel like I am not a kid anymore because I cannot do what I used to do.

I don't get to play in the snow or any thing like that. I always have to be warm and I cannot go out side during lunch when it is cold. It is really bad. I am only fifteen so I do not know what to do right now.

We are not the richest people so it is really hard on my mom to buy all the medicines and things I need. It is really stressful on her.

I don't even know very much about my disease, so it is really confusing for me. The doctors say it is very rare for people my age to have the systemic form of scleroderma.

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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.