Disability awareness group to hold panel for National Epilepsy Awareness Month

The Centers for Disease Control and Prevention estimate around 3.4 million Americans have active epilepsy, which presents as seizures. National Epilepsy Awareness Month will be marked at SIUE by a campaign led by the student organization New Horizons. 

From 4:00 p.m. to 5:30 p.m. on Nov. 29 in the University Club Room, panels will be led by students who have experienced seizures in a campaign to educate the public about seizures and dispel common – and potentially harmful – myths around epilepsy. 

Madalynn McKenzie said the idea behind the panel is to provide an opportunity for people to ask questions about epilepsy in an open format. McKenzie, a member of New Horizons and graduate assistant in the Inclusive Excellence, Education, and Development Hub, is one of the panelists who will be leading the discussion. 

“The purpose of the panel is for people to share their personal experiences either with epilepsy or with non-epileptic seizures, like what I have, because typically the experiences are similar.”

McKenzie said she has psychogenic non-epileptic seizures, often abbreviated as PNES — a condition often misdiagnosed as epilepsy. 

“Mine are actually caused by extreme psychological distress,” McKenzie said. “[They are] stress-induced, like if there’s a lot going on in my life.”

While epilepsy is often hereditary, McKenzie said seizures are not necessarily a purely genetic phenomenon.

“Often it’s a result of post-traumatic stress disorder, or major trauma,” McKenzie said. 

Emily Milano, president of New Horizons, will be coordinating the panel and introducing the speakers. Milano said she does not experience seizures, but has friends who do. 

“I actually know several people who have either epileptic or non-epileptic seizures, and last year I had two friends within the same month have a seizure,” Milano said. “Nobody knew what to do.”

Milano said she got the idea for the seizure awareness panels while speaking with people who have epilepsy and voiced their wishes for harmful misconceptions about epilepsy to be dispelled. 

“There’s still a lot of people out there who still believe the old myths that could hurt them,” Milano said. “I figured the best way to have the general public learn about that is to have people who actually experience seizures to tell them.”

New Horizons’s seizure awareness campaign has been in the works for a few months, but comes in the wake of the recent death of SIUE freshman Morgen Ryan Schroeder. Schroeder’s obituary states that he died of an epileptic seizure on Nov. 3. McKenzie and Milano both expressed their desire to mention Schroeder during the panels.

“I’m thinking about what would be the most appropriate thing to do,” Milano said. “I want to address it.”

Milano said the panelists will touch on many of the most common misconceptions about seizures and explain what to do properly in the event someone has a seizure. 

“The big one would definitely be holding somebody down when they’re having a seizure,” Milano said. “A lot of people believe you should hold the person down while they’re seizing. A lot of people have heard that you’re supposed to literally straddle the person and hold them down while they’re seizing, which is dangerous because they could break something.”

Milano said another common myth is that keeping a person’s head still is helpful in the midst of a seizure, but this too can lead to serious injury. 

“The best thing to do is to get them on their side, and nobody really knows that,” Milano said. “A lot of people actually think that’s harmful.”

McKenzie said one thing she plans to talk about is the variation of types of seizures. 

“[Seizures are] more common than you would think, and there are different types of seizures,” McKenzie said. “When you think of seizures, oftentimes people picture grand mal seizures.”

The National Library of Medicine says that only 25% of epileptic seizures are grand mal, or tonic-clonic seizures. Grand mal seizures often include very visible symptoms, including muscle convulsions, loss of consciousness, and confusion. 

“[For] a lot of people, their seizures don’t look like what you’d think,” Milano said. “Definitely some people start seizing and it looks like the movies, but not all seizures look like that. A lot of people don’t understand how serious the condition is”

For more information on seizures and epilepsy, visit the Epilepsy Foundation’s website.