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Epilepsy Saskatoon aims to spread awareness, grow community presence

Epilepsy Saskatoon says that in Saskatchewan, approximately 11,000 people are living with the neurological disorder. File Photo / Getty Images

March is epilepsy awareness month and a time to share stories to help people understand the experience of living with recurring seizures.

Epilepsy Saskatoon president Lori Newman said the disorder affects around one in every 100 people in Canada.

Read more: ‘It’s a historical day’: Sask. government funding gives epilepsy patients hope

“Using that ratio, it’s about 11,000 people in Saskatchewan who are actively living with epilepsy. One in 26 will develop epilepsy within their lifetime. So it’s extremely common,” Newman said.

“You can develop it at any time in your life and in fact, as you get older, the chances increase.”

According to the Candian Epilepsy Alliance, seizures are a sudden burst of electrical activity in the brain, which causes a temporary disturbance in the way brain cells communicate with each other.

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For Pam Shillington, a board member with the non-profit charitable organization in Saskatoon, she was diagnosed at age four.

“It’s someone who has had more than one seizure, so if you have repetitive seizures and it’s a disorder of the brain causing the seizures,” Shillington said.

“I am fortunate I had surgery quite a few years ago, which controlled it, but every once in a while there’s one that sneaks through, but on a daily basis, not too much. I have a few challenges because of the actual brain damage it causes. Some shortcomings in some things like memory lapses.

“Others (living with epilepsy) aren’t so lucky.”

Read more: Disney actor Cameron Boyce died of epilepsy: Coroner

Shillington said there’s a stigma surrounding people with the neurological disorder of the central nervous system, specifically of the brain.

“People know it’s a brain disorder and so right away they preconceive there’s other things, you’ve got brain damage and then just whatever they throw into that mix or they don’t know that you have epilepsy and maybe recognize that you’re not 100 per cent and judge you,” she said.

“We do lead constructive lives, it can be controlled. Sometimes we just need a little extra help along the way. We’re just like everybody else. We can work. We can go to school. It can be controlled and we can have good lives the same as everybody else.”

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A Saskatchewan mother, Becky Findlay, has lived with epilepsy for less than a decade and said she learned it can take on many different forms.

“I had no idea that there were so many different types of epilepsy. Until I was diagnosed, I thought, ‘OK, epilepsy is the shaking’ and then you’d never think my type is where I daydream, kind of stare off. Just I’m in my own world and I would have never thought, that’s (a form of) epilepsy,” she said.

“There’s another type where it’s just uncontrolled movements … there’s a lot of different ways, different types,” Findlay said.

The president of Epilepsy Saskatoon said while there is no cure, there are treatments available.

“Seventy per cent of people living with epilepsy have their seizures controlled under medication for the remaining 30 per cent sometimes surgery is an option. There are implantable devices, keto diets, things like that that can help control seizures and for some people, that is still elusive,” Newman said.

“We still need to work on absolutely finding a way to find a cure for epilepsy.

“We’re hoping to grow our community so that we can do more things within the community not to generate awareness but also just to have a community presence.”

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