Durham woman says those with epilepsy face a lack of support

Watch the above video: A woman living in the Durham region is looking for increased support for people living with epilepsy. Mark McAllister reports

TORONTO – Living with epilepsy is difficult enough, but the situation is made worse when the support you need is not there.

For Lynsay Gormley, 37, living with epilepsy has been a daily struggle, where anything can cause a seizure.

“Heat was a big trigger, or lights like in movie theatres,” said Gormley. “Anything natural that people do. I would have a seizure anytime, anywhere and it could be bigger or smaller.”

Gormley who hails from the Durham region has found very little support for people like herself who want to talk about living with epilepsy.

“I was really thinking that they must have support groups I’m not aware of, but they didn’t,” she said. “It’s very frustrating and I know it’s frustrating for my friend too who lives in Ajax (who has epilepsy).”

Local organizations like Epilepsy Durham say a lack of resources and government funding prevents them from reaching out to people with epilepsy.

“I think that there could be funding through a government agency to trickle down to local agencies,” said Dianne McKenzie with Epilepsy Durham.

With few other options, Gormley and her friend created their own support group meeting at a local coffee shop to talk, and hope to expand their group to others with epilepsy.

Ontario Health Minister Deb Matthews says there are options for people with epilepsy who might benefit from surgery or other treatment.

“I would need to know more about her particular situation but I can tell you that this is a very exciting time for epilepsy care in the province right now because we know that a subset of people with epilepsy could benefit from surgery that could remove all the symptoms of epilepsy,” said Matthews.

And although Gormley is aware of treatment and medications exist, she hopes to reach others living with epilepsy to talk about the condition.

“I just kind of knew I have to get a hold of more people in more places and do what we have to do to get the word out,” she said. “Because it is a very important topic and it doesn’t get talked about.”