Bruce Mines man advocates for epilepsy awareness on Purple Day

Like the nearly 300,000 Canadians living with epilepsy, Sean Woudstra’s journey with the neurological disorder has been filled with numerous setbacks and tumultuous tests.

But the Bruce Mines resident remains steadfast in raising awareness for the condition to help others who share a similar story – particularly on Mar. 26, which is recognized in Canada as Epilepsy Awareness Day, or Purple Day.

Woudstra was first diagnosed with epilepsy when he was 21.

Now at 36 years of age, he currently lives with medication-resistant epilepsy and suffers from complex partial seizures with loss of awareness.

“I’ve always had these ‘loss of awareness’ seizures,” he says. “My memory is pretty impacted by them. I actually thought they were new, but my family here has been telling me I’ve been having them for a while, so it really affects your memory, unfortunately.”

“I just lose awareness. The lights are on, but no one is home. I go on autopilot.”

Woudstra believes his epilepsy was brought on after suffering a head injury when he was 16 and later when he had a stroke at 19.

Throughout his journey, there have been times when Woudstra would go months without having a partial seizure, to having as many as 16 in a four-day span.

“They’re happening around every two weeks now,” he says. “I don’t remember them afterward. I’ll wake up on my couch wondering why I’m there – I’m totally blacked out.”

Woudstra says he has lost several jobs due to the stigma surrounding his condition.

“In the past, it’s made me feel like I have to hide it,” he says. “But I’ve realized the only way to bring awareness to it is not to hide it. It’s changed my life for the better because I’ve bettered myself for it, and now I’m trying to better everyone else to bring awareness to it.”

“I’m not different; I just have a few bad days.”

While the working field has left him disappointed on numerous occasions, the Bruce Mines resident explains that he’s been particularly surprised with how some specialists in the medical field have treated him as well.

“I’ve been stigmatized by doctors and neurologists down south,” he says. “I went through dozens of them accusing me of doing certain things like drugs and alcohol – just because my epilepsy wasn’t showing up on scans.”

“The stroke made them think I was on drugs since it happened when I was so young. It’s so ingrained in me because it was such a horrible feeling to be told that.”

Born and raised in southern Ontario, Woudstra, along with his wife Holly and two stepsons, Michael and Johnny, moved up north in 2016 and have been living just outside of Bruce Mines ever since.

It’s safe to say he was happy with the transition.

“My neurologist in the Sault, Dr. Joelius Kurniawan, is the first guy to really sit down and listen to me through and through,” he says. “He referred me to the epilepsy monitoring unit in London, which is where I am now.”

“If it wasn’t for the Sault, I don’t know where I’d be. It’s a golden town.”

For the past year, Woudstra has been working full-time in property management and says his team has been super supportive when he needs to take time off.

Coincidentally, Woudstra is spending Purple Day on the road with his wife as they head to London for a consultation with his neurosurgeons on Monday, where they’ll be looking into performing an SEEG (Stereoelectroencephalography).

“Basically, they’re going to stick a bunch of probes in my brain to localize where my seizures are coming from because they still don’t know,” he says. “Mine don’t show up on an MRI or EEG unless it’s a 24-hour recording.”

Despite enduring an uphill battle, Woudstra is beyond thankful for the support from his friends and loved ones.

“If it wasn’t for my family, I wouldn’t be where I’m at,” he says. “I’ve always remained pretty hopeful. I’m heavily influenced by those around me, and having the support at work is a big thing, which not every employer gives.”

At the risk of having a partial seizure at any time, Woudstra wants to ensure the public knows how to react if they see it happen.

“Just stay by their side and keep them safe,” he says. “Don’t restrain the person, and make sure you time their seizure. If it lasts over five minutes, it should be a 911 call. But it’s pretty common for them to last just a few seconds to a couple minutes.”