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My Voice - Q&A With 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.

ashton cooper.jpgQ: How long did it take for you to get an accurate diagnosis?

AC: It was about year or year and a half. We went to see a bunch of different doctors, and they all would give me a different cream to try. One doctor was finally able to recognize it because he had studied about scleroderma briefly in college.

Q: What was the hardest part about growing up with scleroderma?

AC: The hardest thing was dealing with not knowing what it was at first. I had what looks like a huge burn mark on my ankle and people just didn’t respond well to that. I had to transfer schools just so people wouldn’t ask about it all the time. In second grade, the guidance counselor sat down with my whole class to talk about it.

Q: Did you experience any particularly difficult times because of scleroderma and, if so, how did you overcome the obstacles?

AC: At some points, I couldn’t walk because my joints would lock up. I had to sit in a hot tub all night in hopes that it would loosen up. I would miss school when that happened. I also needed an IV with a shot each week. Eventually, I needed a port because I had so much scar tissue that the doctors couldn’t get the IV through my skin.

Q: When you first emailed us about your story, you mentioned a little girl at softball camp who made a mean comment to you. What advice would you give to other kids and teens who face similar situations or are being bullied? What would you say to them to help them make it through this difficult time?

AC: Honestly, don’t worry about it. Often times, these kids just don’t understand. Kids are going to say what they say, and you need to shrug it off. One day, they’ll understand what you’re going through.

ashton cooper 2.jpgQ: What challenges do you foresee scleroderma presenting you in the future?

AC: Hopefully, everything will go smooth. I don’t want to think about challenges. I try to be optimistic about it all.

Q: What would you like to do after college?

AC: I want to join the Peace Corp and work for a nonprofit organization. I like to volunteer and help others.

Q: In one word, describe scleroderma.

AC: Struggle.


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