WILKES-BARRE, LUZERNE COUNTY (WBRE/WYOU) — Epilepsy is one of the most common neurological disorders in the world. Even though it impacts nearly three-and-a-half million Americans, it is still misunderstood by many.
For a new movement, destigmatizing epilepsy is about as big a goal as ending epileptic seizures.
A former Pittsburgh Steelers great is helping champion the effort.
Alan Faneca was an offensive line force during his 13-year NFL career including ten seasons with the Pittsburgh Steelers. But before he ever began his professional playing days, he was battling a foe off the field.
“I’ve never had one around, thankfully, around the football team or during a game,” stated Alan Faneca, spokesperson, for STEPS Toward Zero.
Faneca is talking about epileptic seizures. He experienced his first when he was 15.
“Hollywood does a good job of making movies and scaring people and, you know if you don’t know somebody with epilepsy that’s all you know,” said Faneca.
It’s why Faneca decided to tackle epilepsy as an advocate for the organization STEPS Toward Zero. Its stated mission is to educate, inspire and help the epilepsy community reimagine its goals while striving for zero seizures.
“To be kind of hidden and reserved because you don’t want people to see you have a seizure doesn’t allow you to live a life, and it doesn’t allow you to be who you are,” explained Faneca.
Epilepsy Foundation Eastern PA knows the harm of stigma surrounding epilepsy.
“People with epilepsy don’t have to feel like they are outcasts. They can do things with other people and learn from other people,” stated Mary Loughlin, Northeast Resource Coordinator of Epilepsy Foundation Eastern PA.
Bringing families with epilepsy together that way is something Faneca believes would be a huge score for northeastern Pennsylvania.
“They feel, you know, like one big huge group and I’m sure a community center is only going to foster that idea,” said Faneca.
The goal for that epilepsy community center is to have it open in early 2023 at a site to be determined.