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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.

To Contact the Author
Tyler
Email Withheld
Story edited 09-23-06 JTD
Story posted 10-26-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
CREST Syndrome
Juvenile Scleroderma
Scleroderma Experts
Types of Scleroderma
What is Scleroderma?
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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