A local organization that provides support for people with epilepsy is raising awareness about bullying prevention.
Empowering People’s Independence is based in Rochester and provides services across Upstate New York. That work includes reducing stigma and misconceptions about the seizure disorder as well as providing first-aid tips, said Mike Radell, an EPI educator.
“I think it's the lack of education of what epilepsy is,” Radell said, adding that the agency strives to ensure “that everyone has the tools to be able to support people who have epilepsy.”
Nearly 3 million people in the United States are diagnosed with epilepsy according to the Centers for Disease Control and Prevention. And about one in every five affected students reported being bullied in the 2021-22 school year, according to the National Center for Education Statistics.
A supportive environment can go a long way for those with the diagnosis, he said.
“We see that they have a level of depression or some anxieties due to their diagnosis, it could cause some isolation, some loneliness,” he said. “It also changes their sleep patterns, sometimes their eating patterns because of the anxieties that they experience when they have the disorder of epilepsy.”
Epilepsy can have many different causes, like traumatic brain injury, genetic conditions, stroke or infection, according to the World Health Organization (WHO). Yet about half of diagnosed cases in the world have no known cause.
The risk of premature death for people with epilepsy is “up to three times higher than in the general population,” according to WHO. A large proportion of those deaths — like falls, drowning, burns and prolonged seizures — are potentially preventable.
“Epilepsy is one of the world’s oldest recognized conditions, with written records dating back to 4000 BCE. Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries,” a WHO statement reads. “This stigma continues in many countries today and can impact on the quality of life for people with the disease and their families.”
The stress from bullying can trigger seizures for some, meaning children and teens with epilepsy are particularly vulnerable to negative impacts of bullying. And when bullying or discrimination takes place during a seizure, it adds another level of danger if that person is also not receiving first aid.
Gianna Gacek, a first-year nursing student at Keuka College, is among the students who EPI has supported. She was diagnosed with epilepsy when attending Marathon High School in Corland County — part of a small district of about 700 students east of Ithaca — where she said she faced instances of bullying and discrimination.
“When I had a seizure at school on a bus, unfortunately, somebody took a video of it, and they were all laughing about it and just passing it around the school a lot,” Gacek said. “I got called names, and people would look at me and mimic a seizure.”
Gacek says her friend group also began excluding her.
“When you're diagnosed with epilepsy, you get your license revoked for a couple months to a year. I was one of the few friends that could drive. So, when my friend group found out that I didn't have my license, I wasn't invited to things anymore,” she said. “I tried to keep peace with my friends, but it was really hard because ... anytime they got aggravated they would threaten to flick the lights off and on.”
Gacek since found a group of friends she can connect with at college, she said.
A New York state law enacted in 2012 called the Dignity for All Students Act (DASA) requires public schools to provide students an environment “free from discrimination, intimidation, taunting, harassment, and bullying.” Schools are required to collect and report data on any such incidents on school grounds, school buses, and school functions.
WXXI News reached out to Marathon Schools for comment. Recently-appointed Acting Superintendent William Locke said there is a process in place for reporting incidents that violate DASA.
“Please be advised that any kind of bullying is not tolerated and that strong efforts are in place to address any bullying that may occur,” Locke said in an email. ”We advocate and work toward providing a positive and safe learning environment for all.”
Locke said any suspected incident of bullying, harassment or discrimination can be reported to the district via a form on its website or to designated DASA coordinators assigned to specific school buildings. Similar measures are available in other districts.
While in her experience school staff did not seem prepared to support a student with a seizure disorder, Gacek hopes that people will be better educated about epilepsy going forward.
This story is part of Dialogue on Disability Week — a partnership between WXXI and Al Sigl Community of Agencies — in conjunction with the Herman and Margaret Schwartz Community Series.