One man’s mission to spread the truth about epilepsy

To mark ‘Purple Day’ for epilepsy awareness, Sault Ste. Marie resident Owen Hillstrom aims to correct misconceptions by sharing his personal story of living with seizures

Owen Hillstrom remembers his first seizure like it was yesterday.

“I was seven years old, sitting at the back of my school bus, reading my Pokémon book,” says the Sault Ste. Marie resident, now 28. “And it happened. I just blacked out.”

Over the next two decades, Hillstrom learned to live — and thrive — with epilepsy, an incurable neurological condition that causes recurring seizures. Like so many others, he wrestles with the unpredictability of his medical condition, never knowing when the next seizure will strike.

“It sometimes feels like you’re just waiting for the next one,” he says. “You’re never really sure when a seizure could happen next.”

Speaking to SooToday — in advance of “Epilepsy Awareness Day,” which is recognized across Canada on March 26 — Hillstrom says he is proud to be an advocate for others who suffer from seizures. He has made it his mission to help educate the public about epilepsy and dispel some lingering misconceptions.

“I tell stories to people of things I’ve done in the past,” he says. “They’re sometimes surprised and go: ‘You’ve done that?’ And I say: ‘Yes, of course.’ We can still perform many regular activities in our day-to-day life.”

Epilepsy impacts approximately 300,000 people in Canada, or nearly 1 per cent of the population. Episodes range in severity, from focal seizures (milder motor and sensory impairments) to tonic-clonic seizures (convulsions resulting in complete loss of consciousness).

Despite being diagnosed at such a young age, Hillstrom enjoyed a relatively normal childhood. He played hockey and soccer, and worked at the Sault Golf Club. But while living in Toronto at the age of 20, his seizures became more frequent and eventually unmanageable, forcing him to return home.

What triggers a seizure varies from person to person, but the most common causes are stress, lack of sleep and poor diet. On top of a strict medication regimen, Hillstrom must be constantly aware of these triggers to reduce his risk of having a seizure.

Although many people believe that flashing lights are a significant trigger, Hillstrom is quick to correct that misconception. Photosensitive epilepsy, which is triggered by flashing lights, accounts for less than five per cent of those diagnosed as epileptic.

“I get that question all the time,” he says. “But really, flashing lights or strobe lights only affect a small portion of people with epilepsy. Swallowing your tongue while having a seizure is also another large misconception.”

Epilepsy Awareness Day, or Purple Day, is aimed at eliminating stigmas while deepening the public’s understanding of the disorder. During his time in southern Ontario, Hillstrom discovered Epilepsy Toronto, an organization dedicated to improving the quality of life for people living with the condition. At this time of year, there are many activities and initiatives acknowledging Purple Day, including the ‘purpling’ of the Toronto sign and CN Tower.

Hillstrom says that although the Sault is very accepting, he still wants to see events held locally, such as an awareness walk or a hockey charity event.

“There’s a lot of positivity in this community that doesn’t get brought forward enough,” he says. “There are a lot of people who are very accepting of these ideas and want to push these ideas forward in the community and bring more awareness. Purple Day should be expanded here, and it’s one of those things where I know we can do it.”

On March 21, Sault Ste. Marie’s city council kicked off its meeting with an official proclamation to recognize March 26 as Purple Day for Epilepsy Awareness in the city. Residents are encouraged to wear purple to show their support, and to continue having conversations aimed at reducing the stigma.

Mayor Christian Provenzano thanked Hillstrom personally for his advocacy, and pledged the city’s support for local organizations working to improve the quality of life for people living with epilepsy.

Hillstrom’s reaction to the proclamation goes far beyond appreciation.

“It means a lot and hopefully we can plan to go bigger,” he says. “To know there’s a day where you’re valued, it units a community. Once you realize you can be accepted, it’s a beautiful thing.”

Hillstrom says Purple Day is an opportunity to educate people about epilepsy, including how to respond to someone experiencing a seizure. Most seizures last less than five minutes, for example, and are often not considered a medical emergency. If they persist longer, then people should dial 911.

While that situation can be stressful, Hillstrom says following a few basic steps can go a long way in assisting the affected individual.

“If someone is having a seizure, I want people to know how to help them,” he says. “Stay as calm as you possibly can, and time it. If you have the education, then you can be aware if they have to go to the hospital or not. I’ve had many tonic-clonic seizures without needing to go to the hospital.”

More than anything, Hillstrom wants to mark Purple Day by acknowledging the overwhelming support he continues to receive from family, friends, and doctors. He credits his parents Don and Donna, his stepmom Michele, and his sister Emily, as being pivotal in helping him to manage his epilepsy.

“I’m so lucky that I have my family,” he says. “Their support has been the most important thing to me. I don’t know where I’d be if I didn’t have them.”

The support doesn’t end with his family. Hillstrom engages in a weekly virtual chat with colleagues from southern Ontario. Medically, he is supported by Dr. Joelius Kurniawan, who he sees regularly for treatment and advice.

It has been more than a year since his last tonic-clonic seizure.

“A lot of people don’t understand what’s happened to me,” he says. “Awareness is everything, and epilepsy is the one thing I want to be talking about right now.”

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