Friedreich’s Ataxia: Learning to Ride Again

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At 15, Nicole Kramer filled her time doing what young teens do best: hanging out with friends, playing outside and riding her bike.

But during her sophomore year of high school, her world came crashing down when doctors diagnosed her with Friedreich’s Ataxia (FA). According to Dr. Christopher Gomez of University of Chicago Medicine, FA is a degenerative disease that causes progressive loss of coordination and impairment of heart function and skeletal ability.

“They said some pretty scary stuff,” Nicole says. “They said most people end up in wheelchair five years after you’re diagnosed and people usually die in their 20s to 30s and that’s a lot to take in when you’re only fifteen years old.”

Refusing to let the disease rob her of her favorite activities, Nicole did what she could: modify.

“The biggest thing I’ve learned since being diagnosed is that even though I can’t do everything the same that I used to, I can still do things just in a different way,” she says.

Things like riding her bike.

A few years after her diagnosis Nicole traded in her old bike for a new one, one she can pedal while sitting down (and one that she jokes is much more comfortable than her old bike). Since then, she’s been a participant in Ride Ataxia, a race dedicated to raising money and awareness for the disease in the hopes of finding a cure. And with every pedal she takes, Nicole helps her body deal with the disease it houses.

“We have patients involved in as … aggressive an exercise plan as they can handle because it’s believe that exercise is helpful to diminish the consequences and improve the compensation the patient can do against the disease,” Dr. Gomez says.

Nicole urges others with FA to face the disease head on and refuse to give up their dreams.

“… Don’t let the disease drag you down because it might be a part of who you are, but it doesn’t define who you are,” she says. “I never let anything hold me back. I always do what I put my mind towards. I just put a smile on and go for it.”

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