Silent about her epileptic seizures, Sudbury woman now finds support in social media group

In Sudbury, Jenny Lamothe says she's kept quiet about her battle with epilepsy until now.

Depression, fatigue part of one Sudbury woman's daily struggle with epilepsy

Jenny Lamothe is part of SEIZE, a newly-formed group who wants to support people with epilepsy. (Roger Corriveau CBC)

Organizations across Canada are marking Epilepsy Awareness Month this March.

In Sudbury, Jenny Lamothe says she's kept quiet about her battle with epilepsy until now.

Lamothe is part of a group of called SEIZE— the Sudbury Epilepsy Information Zone.

The grassroots movement is using social media to allow people to share their stories.

Lamothe says she's been overwhelmed with the response since the group started up last month.

"It's been really interesting meeting other people with epilepsy," Lamothe said. "I don't have a lot of experience with that, so hearing all of these people echo the things I've been thinking all these years gets you really revved up for it."

Approximately 300,000 Canadian have epilepsy

Epilepsy Ontario estimates that approximately 300,000 Canadians have epilepsy and 1 to 2 per cent of the population have experienced or will experience an epileptic seizure. That is twice as many as people with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined, the organization said.

Lamothe, who has first hand experience with the disease, explained that seizures are just one part of the challenge.

"There's a lot of issues with fatigue, there's a lot of memory issues of course anytime you're dealing with the brain," she said.

"There's depression and anxiety that comes not only with the disorder, but because it's hard to socialize with people who maybe don't understand when all of a sudden you drop down and have a seizure."

Lamothe says SEIZE hopes to start regular local epilepsy support groups, as well as organize in-school presentations to help students better understand the condition.

March 26 has been marked as Wear Purple for Epilepsy Day.