Advocates on Steps of Congress 2013
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Hannah Tibtani: Hurdling Scleroderma

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

hannah tibtani imageThis 14-year-old from Ohio has seen all the tough times that the disease can dish out – from a month-long hospital stay because of gastrointestinal issues to bullying at school. “Voice” editor Christina Relacion had a chance to chat with Hannah about how she deals with the hurdles scleroderma has made her jump.

CR: Tell me, how did you end up in the hospital?

HT: About four months ago, I didn’t have a good appetite. My mom knew something was wrong because I can eat a lot. So, we went to the doctor to get checked out because I just couldn’t walk, sleep or do anything. At first, they thought it might be a virus and sent me home. Then, I lost 16 pounds. You could see my ribs and my hips were sticking out. I was sent to the hospital. They did a colonoscopy and an endoscopy, and found that my esophagus had tightened and that’s why I couldn’t get any food down. I needed a feeding tube because of the problems.

CR: What can you eat now that you’re home?

HT: I’m able to eat but I have to eat a soft food diet. We have a special blender so I put real healthy things in, like strawberries and other fruit. I blend it up and eat it like that. They gave me this medicine to relax my esophagus so food can go down easier.

CR: How long do you need to stay on the soft food diet?

HT: I don’t know how long I’ll have to be on this diet. It’s not looking good.

CR: What have you learned from having scleroderma?

HT: I’m learning that scleroderma can’t stop me from doing anything. The doctors said I couldn’t run track because of my knees. Then, when track season came, I got first place in hurdles, I beat the record, and my name’s up in the school. This year, it’s not as good as it was, but I’m working hard at it. After this interview, I’m going to the track. I’m trying so hard to get my strength back.

CR: Is it true you were bullied in school because of how the scleroderma made you look?

HT: In fifth grade, I was made fun of a lot. There was a boy who saw some of the scleroderma marks on my arm. He said, “Eeew, what is that?” I wish people would have more respect for others. They don’t even ask, “Are you all right?” You don’t have to be rude when others are different.

CR: How does scleroderma make you feel?

HT: It makes me want to cry. The past few years have been depressing for me. I don’t feel like I deserve this. I’m just a kid. I want a normal, kid life.

CR: Who do you look to for support and guidance?

HT: The only one who I can look up to is my mom. My mom gives me the most advice and the most everything. When I was in the hospital, for months, she wouldn’t eat in front of me because she knew how much pain I was in. I don’t know anyone else who is as close to their mom as I am to mine. She sticks by me. She puts her life aside to make me happy and comfortable because she knows how unhappy and upset I am about this.

On proving her doctors wrong…

“When I was first diagnosed with scleroderma, the doctors said I couldn’t run track. I proved them wrong and became a hurdler, not just in track, but in life, too. Scleroderma keeps throwing hurdles at me that get higher. Well, I’m going to continue to jump higher, and if it becomes too high to jump, I’ll become a pole-vaulter. Scleroderma has no idea what kind of battle it’s in for, and who it’s trying to fight, because I WILL win this battle.”

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

 

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