Griffin Brosky first discovered he had epilepsy when he was behind the wheel. At 21, Brosky suffered his first seizure while he was driving, totaling his car.

Brosky, now 28, is still learning to live with epilepsy, but he’s found comfort in meeting others who have the condition.

“It’s good that people know it’s out there and that there are people struggling with it,” Brosky said. “It shouldn’t limit you in any way.”

Brosky and his family were among participants in Empowering Epilepsy’s Purple Day Party at AMF Riviera Lanes in Fairlawn on Sunday afternoon to help raise awareness about the condition.

People trickled in and out throughout the day to bowl in honor of Purple Day, an international grass-roots effort aimed at increasing awareness about epilepsy around the world.

Empowering Epilepsy, which hosted the event, is a Solon-based organization that helps Northeast Ohio residents through informational services and free programs.

Leigh Goldie, the founder and president of Empowering Epilepsy, said the day wasn’t meant to raise money for the organization. Instead, it served as a way to raise awareness about the condition while giving people with epilepsy and their families a fun afternoon.

“I want to show people what they can do with epilepsy,” Goldie said. “I want to provide experiences and make positive, lasting memories.”

Epilepsy is a complex condition with a web of factors involved. It affects men and women differently as well as children and adults, and there are more than 40 types of seizures a person can have.

Awareness is a main goal surrounding epilepsy, as it’s a condition that often gets placed on the back burner when it comes to medical funding.

Lack of publicity

Epilepsy affects more people than autism, cerebral palsy, multiple sclerosis and Parkinson’s disease combined, according to Akron Children’s Hospital, but it receives less funding than each of those conditions. Cureepilepsy.org estimates up to 50,000 deaths occur in the U.S. annually from epilepsy, compared with 40,000 deaths from breast cancer, according to the Centers for Disease Control and Prevention.

“All these other diseases get a lot more publicity and don’t carry such a stigma as epilepsy does,” said Dr. Lucyna Zawadzki, an epileptologist, or neurologist who specializes in epilepsy, at Akron Children’s Hospital.

Increased awareness would also help eliminate the stigma that affects those who have epilepsy, many of whom develop depression and anxiety because of it, Zawadzki said.

“I think we need more spokespeople with epilepsy to come out and share their stories so our young patients and teenagers believe there’s a future for them … that it doesn’t end with a seizure,” Zawadzki said. “That there’s hope.”

That feeling of hope, along with some struggle, pulsated through the bowling alley as people with all different connections to epilepsy gathered to recognize it.

Sharing experiences

Some shared their triumphs, like Goldie, who endured seizures for 12 years until she had brain surgery when she was 22. She had one “aftershock” seizure after, but she’s since spent the past 24 years seizure-free.

“For me, it was a really helpful thing that changed my life,” Goldie said.

But there’s no denying the hardships epilepsy can bring. Tana Alexander and JoAnne Dawson, longtime friends and volunteers with Empowering Epilepsy, initially joined to seek support while caring for Alexander’s son Robert Shanklin, who was autistic and epileptic.

Shanklin died in May last year from sudden unexpected death in epilepsy (SUDEP) at just 28 years old.

Alexander and Dawson said they felt people were more accepting of Shanklin’s autism than his epilepsy, which often caused him to have seizures in public.

“It’s a special need people think is on the outskirts, but it’s not,” Dawson said.

Uriah Heben, another volunteer with the organization, deals with epilepsy firsthand, as he’s had seizures since he was a teenager.

“After a while it sort of puts a veil over your life,” Heben said. “It’s a debilitating undercurrent in a way.”

Since he’s joined the organization, though, Heben said hearing other people’s experiences with epilepsy has helped him withdraw from isolation.

“To have these people in these rooms sharing these stories, it made me want to cry it felt so good,” Heben said.

Empowering Epilepsy has a team for this year’s Rite Aid Cleveland Marathon in May and is still in need of runners and volunteers. Goldie said she’ll waive entry costs for the first five people who sign up to run in the race by Tuesday.

People can sign up to run the 5K, 8K, 10K, half-marathon or full marathon. All others who want to participate can get 10 percent off if they join the Empowering Epilepsy team. To sign up, email Goldie at leigh@empoweringepilepsy.org.

Theresa Cottom can be reached at 330-996-3216 or tcottom@thebeaconjournal.com. Follow her on Twitter @Theresa_Cottom .