‘A thunderstorm in the brain’: Advocate shares journey to raise awareness, break stigmas during National Epilepsy Awareness Month

RICHMOND, Va. (WRIC) -- As part of National Epilepsy Awareness Month this November, an advocate from the Epilepsy Foundation of Virginia is using his story to make a difference.

Lowell Evans was diagnosed with epilepsy after having his first seizure in college. But he never let it get in his way. He went on to finish school, work, start a family and now works as the regional director at the Charlottesville-based Epilepsy Foundation of Virginia.

"Epilepsy is like a thunderstorm in the brain," Evans said.

The Epilepsy Foundation defines epilepsy as a brain disorder that causes recurring, unprovoked seizures. While it can be caused by a brain injury or a family trait, often, the cause is unknown.

In his sophomore year of college, Evans said he hit his head playing basketball. He was dizzy afterward, but he got up and felt fine.

Three months later, he had a seizure.

"I wake up to find three EMTs standing over my bed," Evans said. "When they took me to the hospital, they said we think we detected epilepsy. I never heard of the word."

Evans said when he returned to school, many thought of him differently after finding out his diagnosis. People assumed he would have to drop out of school or quit basketball.

"They were looking at me as somebody different," Evans said. "Like I was not worthy of, or that I could not do the things that I was doing at first. Just over one night."

The foundation said that often the public misunderstanding of epilepsy and the treatment of people with the disorder are bigger problems than the seizures themselves.

"Everyone thought it was something that they could catch," Evans said. "That I was supposed to be failing at in life. That is what totally changed me. But, it made me work harder to prove to them that I was normal."

Evans took extra hours the next semester and worked a second part time job. He continued to play basketball, and graduated on time. He became a husband and a father.

"You can still live with epilepsy," Evans said. "I wanted to prove that point to them. And I did."

Evans later wrote a book inspired by his and others' experience with epilepsy called "The Village."

"No one wanted to talk about epilepsy, and I wanted to," Evans said. "Maybe if they don't want to talk, they'll read."

The book caught the attention of others in the epilepsy community and he was invited to speak at an Epilepsy Awareness Day function in California. When he returned from Virginia, he heard from the director of the Epilepsy Foundation of Virginia who brought him on as the regional director.

Now, he tries to educate people about epilepsy and get rid of the stigmas related to it.

"[We] make people understand that you can live a happy, healthy life with epilepsy," Evans said.

To learn more about the foundation in Virginia, visit their website.