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I'm an Olympian Determined to Show Kids That 'Epilepsy' Isn't a Dirty Word

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Epilepsy is a misunderstood neurological condition characterized by seizures. It’s the U.S.’s fourth most common neurological disease, affecting nearly three million people in the country. But when I was growing up, it also felt like a dirty word — something we didn’t talk about.

I was first diagnosed with epilepsy when I was 9 years old and in the fourth grade. I was experiencing absence seizures, which are basically brief, sudden lapses of awareness. People didn’t understand what was going on when I would break off mid-conversation or even mid-sentence, and it was really uncomfortable and embarrassing for me. I didn’t know how to talk about what was going on, so I said nothing. As I got older, my seizures progressed to convulsions. They made me feel like I had no control over what was happening to me and that my options in life were becoming limited by my disease.

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For awhile, I didn’t want to participate in anything — including my passion, ice hockey —mostly because I didn’t know what my body would do next. I felt like I had no control over anything. Eventually, though, I found a treatment regimen that worked for me, and I realized hockey helped put me back in control. I could still participate as an equal (even a standout!). In fact, by working hard, I could be better at it, unlike with seizures, which you can’t just beat by “trying harder.”

In college, I learned through trial and error I had to be open and honest about my disease, both with my coach and with myself. If I didn’t talk about it, then others wouldn’t know what was going on and would draw their own conclusions. I made sure to be open with my coach about my health, I maintained my treatment regimen and I worked hard. My hard work paid off, and in 2006 I helped the U.S. Women’s Olympic Team win a bronze medal in the Olympic Winter Games in Turin, Italy. 

I proved to myself that epilepsy doesn’t have to limit what I can do. And today, I’m committed to sharing that lesson with others facing their own epilepsy diagnoses. This year, I partnered with Eisai Inc. and Medikidz® to launch and raise awareness about a comic book called “Medikidz Explain Playing Sports with Epilepsy.” The book focuses on playing sports while living with epilepsy, and not letting the disease get in the way of doing what you love. It’s the fourth book in the “Medikidz Explain Epilepsy” series, which is designed to teach children and their peers about epilepsy in an easy-to-understand and compelling way.

For most of my life, I was very secretive about my epilepsy, and I didn’t really know how to talk about it. I wish I had more information and a better understanding of the disease when I was diagnosed. I hope this book shows children with epilepsy that it’s nothing to be ashamed of, and that their disease doesn’t have to prevent them from pursuing their dreams.

Image via Chandra Gunn’s Instagram

Originally published: June 6, 2016
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