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The National Conference In My Own Words

Editor's Note: When I first met Rebekah Graff in one of the coffee shops at the Gaylord Texan Resort on the night before the start of this year's conference, I immediately was captivated by her bright smile and excitement about attending this educational event. Until the conference, this 15-year-old, living with systemic scleroderma in Dripping Springs, Texas (population: 1,870), had never met another teen living with the disease. In this issue of "Scleroderma Voice," Rebekah details her conference experience and explains just how lifechanging this event can be. CR

rebekah-graff.JPGI was diagnosed with systemic scleroderma in February 2010, one month before my 13th birthday. When I was first diagnosed, I was terrified and felt alone. I had no idea what scleroderma was; I hadn’t even heard the word before! I’ve always known something was different about me because ever since I was a little girl, my hands turn purple when I get cold. I never thought it would end up being something like scleroderma.

I wanted to know more about the disease, so my doctor - Lisa Petiniot, M.D. - at Dell Children’s Medical Center in Austin suggested I read about scleroderma on the Scleroderma Foundation’s website. I joined the Scleroderma Foundation to educate myself. It was a relief to read stories about how other people cope with this disease since I didn’t know anyone else who had it.

When I found out there was a national conference for scleroderma patients, I told my mom I was eager to attend the next conference, and she agreed that we should go. As summer 2012 approached, I became more excited. I wanted to learn more about scleroderma and maybe even meet other kids my age.

Finally, the first day of the conference arrived. On Saturday morning, when I attended my first workshop in the juvenile program, I was so glad to finally meet other kids who have scleroderma. They may not have the systemic type like I do, but knowing that someone my age had the same disease gave me some relief that I was not alone.

I instantly became close with all the kids in the juvenile workshops and began to share what I felt when I was diagnosed and how I cope. We talked about how all of us felt hopeless and scared when we were first diagnosed, but then how meeting other kids with our disease gave us happiness and hope. We talked about how we have to take lots of medication and go to the doctor more often, but having scleroderma doesn’t scare us as much as it did when we were first diagnosed. One girl mentioned her mom ordered her a T-shirt that said “I Have Scleroderma, But Scleroderma Doesn’t Have Me.” I really was amazed by that phrase, because it is so true. Having scleroderma puts limitations on some of the things we can accomplish, but if we work hard, we can exceed those limitations. Scleroderma won’t ever stop us from chasing a dream.

I later attended the Juvenile Panel workshop. Hearing the girls I had become friends with talk about their own scleroderma stories made me feel less lonely. I could relate to everything they were going through and I was glad to have support. Finally, I knew others understood the struggles I have gone through having this disease.

I’m so thankful to the Scleroderma Foundation for putting on this conference because it gave me a feeling of hope. I still keep in touch with some of the other kids from the Juvenile Program so I can talk to them about my doctor’s appointments or my struggles, and they will understand like no one else can. I’m thankful for the friendships I made during that weekend because they will last a lifetime.

This article originally appeared in the Fall 2012 issue of "Scleroderma Voice."

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