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My Voice

Description: My Voice

This area features stories from children and teens living with scleroderma. We want to show you that you are NOT alone! If you’d like to share your scleroderma story with us, email mystory@scleroderma.org!

2011 Juvenile Program at National Conference

Alexis Schwei
Alexis is in 9th grade and her mother Cathy has been living with scleroderma for the past five years. They attend the National Conference as much as possible to learn more about the disease and to connect with others battling it. It's become a highlight for their family and Alexis encourages all families who deal with scleroderma to attend!

Lilliane Grahek
Lilliane Grahek was just 2 years old when the first blotch appeared. The spot on her stomach looked like a bruise, her fair skin turning a darker shade. The spot didn’t go away quickly, and then Lilliane’s mom, Kerin Clark Severson, noticed another spot forming.

McCoy Penland
In June 2011, Tara Penland noticed that her daughter McCoy seemed to have less energy and was scratching herself all the time. Three months later, four-year-old McCoy was diagnosed with scleroderma. Today, the 7-year-old second grader is thriving and enjoying playing soccer and the violin. This is McCoy’s scleroderma story, as told by her mother, Tara.

Hannah Weber
Once a Voice Magazine "cover girl," Hannah is 13 years old and was diagnosed with systemic scleroderma and Raynaud's at age 5. She has attended every National Patient Education Conference since it was held in St. Louis, MO six years ago.

Elie Ramia
Elie Ramia's parents, Terri-Jo and George, noticed something strange on her leg when she was 3. This is Elie’s scleroderma story, as told by her mother, Terri-Jo Ramia.

Ashton Cooper
Ashton Cooper is an 18-year-old freshman at the University of Louisville in Kentucky. She was diagnosed with localized scleroderma when she was 7. We talked with Ashton recently about growing up with the disease, including being bullied at camp, difficulty taking medications and her future.

Eric Priest
17-year-old Eric Priest, who just started college at the University of California at Berkeley, talks about transitioning into dorm life after graduating from high school and the changes he has had to make in his life after his diagnosis.

Abbey Quinn
Twelve-year-old Abbey Quinn has told her story before. This seventh grader from Michigan was diagnosed in 2010 with linear scleroderma, and was profiled recently, along with her parents, in a new awareness video that educates the public about the disease.

Rebekah Graff
15-year-old Rebekah Graff gives her account of visiting the Scleroderma National Conference for the first time in 2012 and meeting other kids like her with scleroderma.

Hannah Tibtani
Eighth grader Hannah Tibtani was diagnosed with scleroderma in 2011 after experiencing symptoms for a few years.

Ansley Lesley
"Voice" Editor Christina Relacion recently talked with 10-year-old Ansley Lesley of Hartsville, S.C., about living with the disease and winning the Scleroderma Foundation's first holiday greeting card art contest.

Caroline Dziel
Sixteen-year-old Caroline Dziel, of Belchertown, Mass., is just like most other high school juniors. She's a student council member, plays sports (volleyball, skiing and softball), likes hanging out with friends and loves shopping.