Advocate Heather O. is a founder and leader of support groups to encourage others in their battle with epilepsy

Co-founder of the Nebraska Epilepsy Support Group at Creighton University Medical Center in Omaha

Diagnosed with epilepsy at age 18 months

“Now I have no problem saying I have epilepsy.”

My mom and I started an epilepsy support group in 2004. Before that, I didn’t know a single person with epilepsy and I didn’t have anyone to talk to about it. That’s no longer the case.

Finding other people with epilepsy and discovering that I was not alone was an awesome thing for me. Now I have no problem saying I have epilepsy. Just talking about epilepsy seems to bring out a curiosity in people, and I’m happy to answer their questions.

Ten years ago I didn’t realize how many people were impacted by epilepsy. Anybody can develop epilepsy. It doesn’t discriminate. We all know somebody who has it—a sister, brother, friend of a friend.

For me, it wasn’t an overnight success. I saw 10 doctors before I found the right treatment. It took a lot of time, work, effort and patience.

Don’t give up. That’s my advice.

Do what’s right for you, but don’t be afraid to speak up. And don’t lose hope. I was there too.

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