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Q&A: Epilepsy Advocacy Network works to expand awareness, resources for people with epilepsy

Epilepsy Advocacy Network Executive Director Kari Jones.
Camryn Cutinello
Epilepsy Advocacy Network Executive Director Kari Jones.

One in 26 people will develop epilepsy in their lifetime, but many don't know what to do when someone has a seizure.

The Epilepsy Advocacy Network opened three years ago to raise awareness on the condition. They offer free trainings on what to do when someone has a seizure and host support groups for people with epilepsy.

WCBU's Camryn Cutinello spoke with Executive Director Kari Jones about the resources they provide for people in central Illinois.

This interview has been edited for length and clarity.

What work does your organization do for people with epilepsy?

Kari Jones: So some of what we do as Epilepsy Advocacy Network is educating. We do training for people to be certified and know how to respond in the case of different types of seizures. And it's also just a way to kind of broaden people's minds and perspective so that they understand this condition that's actually much more common than people realize. One in 26 people have epilepsy. So there's a high likelihood that you know someone with epilepsy even if you don't realize it. So that's one piece of it, is that education and advocacy. And then another piece is case management for people with epilepsy. So we're able to work with people with epilepsy and with their caregivers to be able to connect them to the services that they need, whether that's medical services, social services, or just support.

What are some of the most common misconceptions you see people have about epilepsy?

Jones: One of the biggest ones is that people think if someone has a seizure, that they might swallow their tongue. That's one that we still hear, even though I think it's something that many groups have tried to kind of bust that myth. But a lot of people still think that, and that's actually much more dangerous than just letting the seizure take its course, as long as someone's not near something sharp, or something that they're gonna hit themselves on. You never want to put something in someone's mouth when they're having a seizure. People often don't realize the many different types of seizures. Like I mentioned, there's absence seizures, where someone might just have a blank stare for a while. There are these simple, complex partial seizures, where people might have different movements that they're just doing over and over again. So it's not always that grand mal tonic-clonic, where someone falls to the ground.

How is epilepsy diagnosed? And is it ever misdiagnosed or missed in people?

Jones: I would say, for a lot of people, they don't even realize that something that they're having is a seizure, especially in the case of those absence seizures. People might think they're just daydreaming, or that sort of thing. And so there are special doctors, there's neurologists, obviously, that you can see who are able to diagnose. And then there's epileptologists, who are sort of the specialist in the neurology sector, that are able to maybe pinpoint exactly where the seizure is coming from, be able to find the type of treatment that's needed. So we always try to recommend and that's something that we can do is getting people connected with a neurologist, and if necessary, and epileptologist.

Can you talk a bit about that connection with mental health for people with epilepsy?

Jones: There's a strong correlation between epilepsy and mental health conditions, especially anxiety and depression. And a lot of that has to do with how isolating epilepsy can feel. [It] can often be kind of stigmatizing for people who are going through it. And just the unpredictability of epilepsy and when seizure might happen, there's really no rhyme or reason in a lot of cases. And that causes a lot of anxiety for people. So it is a strong correlation, unfortunately. And that's one of the things that we try to work with people on as far as having support groups where they can meet other people who are going through that same journey as they are and kind of understand it, because from the outside looking in, you can never quite understand what that person's going through

As a whole in central Illinois, what are the resources for people with epilepsy?

Jones: So there are a few organizations that are focused on epilepsy in different ways, and some are more research focused. Some might just might be offering support groups. That's one piece of what we do. And so we do have a support group in Peoria every second Tuesday of the month at Lakeview Library. And we have support groups throughout the area where we have coordinators. So even if someone's not in Peoria, they can go on our website and see where their nearest support group might be.

We're really trying to push trainings in the schools and in organizations because even if you don't know right now that you have someone working with you who has epilepsy, like I mentioned, one in 26 people will develop epilepsy at some time in their life. So a seizure could happen unexpectedly, and you don't want to be there not knowing what to do. And seizure first aid honestly is not extremely difficult. A lot of it is that staying calm, making sure the person's in a safe space. But being through that training will really help people feel confident to be able to respond and know that what they're doing is their best thing to help their friend or co-worker or the student in their class.

Camryn Cutinello is a reporter at WCBU. You can reach Camryn at cncutin@ilstu.edu.