Event advances epilepsy profile, research

Most residents know lilac is Spokane’s color. But most probably don’t know that lilac or purple is also the color of epilepsy awareness.

Chris Engle knows. Engle was diagnosed with epilepsy “out of the blue” shortly after his 20th birthday in 2007. Two tonic-clonic – also known as grand mal – seizures in two days sent him to the emergency room, where he had yet another seizure.

“With that one I flipped out of bed and fractured my C-2 vertebrae,” Engle said. “I fell out of bed at the hospital.”

Engle spent the next three days sedated in the intensive care unit while doctors tried to find out what was going on with him.

“I was in a neck brace for six months,” Engle said.

His mother, Andrea Darcy Engle, became his primary caregiver and advocate.

“It was a dramatic life change within just two weeks,” Andrea Engle said, adding that her son was an avid swimmer and a 4.0 student before the diagnosis. “And we don’t really know why this happened.”

On Saturday, the Engles will be at the annual Northwest Run/Walk for Epilepsy in Riverfront Park.

The event aims to raise awareness about epilepsy, which affects as many Americans as cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

“It frustrates me that people don’t really understand what epilepsy is,” Chris Engle said. “They think it’s going to go away. People don’t know you can die from it.”

Andrea Engle said it’s frustrating that people don’t know there are many kinds of seizures and that a seizure rarely looks like it’s depicted in the movies.

“People think you take a pill or have surgery and then it goes away,” Andrea Engle said.

Chris Engle takes three medications every day and he had a vagus nerve stimulator implanted in an effort to stop the seizures.

“I still have seizures every month,” Chris Engle said, sharing the frustration of the many epileptics who don’t find out why they have seizures or manage to control them.

Regardless of the medications and the side effects that come with them, Chris Engle was able to finish a degree in government at Eastern Washington University. He has tremors and some speech difficulties, but he also has a big, warm smile and a solid handshake.

When Andrea Engle talks about the lack of resources for epilepsy research, Chris Engle lights up.

“There’s too little funding,” he said.

The Engles are encouraged by the research involving returning soldiers who have traumatic brain injuries, and with the attention the National Football League has been paying to players with repeated head injuries.

“Maybe some of the research can help us,” Andrea Engle said, adding that she would love to see more fundraising for research and more awareness about epilepsy.

“There is a stigma attached to it. People think it’s embarrassing,” Andrea Engle said. “And if you are working you may be afraid of losing your job, if you tell people you have epilepsy.”

The Engles are looking forward to Saturday’s event in Riverfront Park.

“We hope to see a lot of purple there,” Andrea Engle said.

Watch Pia Hallenberg talk about this story on KHQ