Author Archives: DHamel

Hidden, not rare: Why Alex Johnson is using a sweater to raise epilepsy awareness

March 26, 2026

By Deron Hamel

For Alex Johnson, the phrase “Epilepsy: Hidden, Not Rare” resonated with him when he saw it printed across a sweater at the Epilepsy Shop, Epilepsy Ontario’s online store.

Alex, who is living with epilepsy, says he felt a personal connection with the message, which prompted him to buy the sweater.

“The message reminded me that lots of people couldn’t see (my epilepsy), but I knew it existed,” Alex tells Voices of Epilepsy. “This was a message that really caught me.”

There were shirts and sweaters with other messages, but Alex says that one stood out most for him.

“It was a message that people needed to see and understand; it’s a message that should be reaching the public,” he says. “It’s not necessarily me saying something about myself, but it is something I am saying to the public.”

The Epilepsy Shop was launched in 2020 and sells an array of colourful T-shirts and hoodies embossed with campaign names to help support local epilepsy agencies and raise awareness of seizure disorders.

Customers can find regular T-shirts, women’s cut T-shirts or hoodies in a variety of colours and sizes. Every item is created on demand to eliminate waste, and all profits support epilepsy services and programs.

Alex says he would like to see more apparel with messaging directed at the public at large, which he believes would be a helpful way to increase epilepsy awareness.

He suggests that adding phrases like “There are Many Different Types of Seizures” or “One in 100” – a reference to the number of Canadian adults estimated to be living with epilepsy – would further educate the public.

This sort of messaging, Alex adds, is prominent on social media or in pamphlets during March – Epilepsy Awareness Month – but not throughout the rest of the year.

“The other 11 months of the year, nobody will know, nobody will see it on social media, but there is an opportunity to (send these messages) with shirts,” he says.

Click here to visit the Epilepsy Shop.

‘Epilepsy is just one part of my life,’ student says

February 9, 2026

By Deron Hamel

“Don’t let your epilepsy control you; it’s just one part of your life.”

Taylor Kepka says if she could write a letter to her younger self, this would be the opening sentence.

Looking back, Taylor, now a university student, says when she experienced her first seizures she didn’t know what was happening, and it was scary.

“It was frustrating and confusing, and not having any answers made it even harder,” she says. “Once I got diagnosed with epilepsy, things made a little more sense. At least I knew what I was dealing with.”

The Oakville resident says it took time to get a diagnosis, and that made matters more difficult.

But she says she wants her younger self to know that the diagnosis will be a big hurdle she will successfully climb and that even though there will still be challenges, having epilepsy will not define who she is.

“It’s not always easy, and I still get a bit anxious and fearful about it, but I’ve learned how to manage it,” Taylor says of living with epilepsy. “I’ve figured out what helps my health and what doesn’t, and I’ve built a routine that works for me. It’s something I live with, but it doesn’t control my life as much now.”

Taylor says school became a significant challenge for her, primarily due to the frequent seizures she experiences. She says the episodes can take a toll, leaving a noticeable impact on her memory and her ability to retain new information.

Despite these challenges, Taylor says she is hopeful and that with the right support system and the academic resources available to her, she can – and will – continue pushing forward.

“Having epilepsy has made me more understanding, and it’s taught me that I can handle things even when they’re unpredictable,” Taylor says. “It’s shaped how I approach life and my goals. I know what I want, and I’ll work as hard as I can to get there.”

As a final note to her younger self, Taylor says she would send a reminder to never let epilepsy control her life.

“It’s just one part of your life,” she says. “You’ll figure it out, and you’ll get stronger from it, even if it doesn’t feel like it right now.”

Taylor is one of four recipients of Epilepsy Ontario’s 2025 scholarship. For more than 15 years, the organization has provided scholarships to exceptional students who have confronted and overcome significant barriers in their academic and personal lives due to epilepsy.

Student using epilepsy experience to fuel advocacy and research

January 9, 2026

By Deron Hamel

Vivienne Le says that if she could speak to her younger self, the first thing she would tell herself is that having epilepsy will not make her “less capable” or “less worthy.”

The student from Ottawa, who is studying health sciences at Queen’s University, says when she was younger she felt “frustrated and alone,” and wanted to blend in with her peers without constantly having to worry about having a seizure or hiding her condition.

Looking back, Vivienne says the things about epilepsy that frightened her when she was young now give her strength.

“I would tell (my younger self) not to be afraid to speak openly about her experiences because sharing her story will connect her to others and help combat the stigma that once caused her pain,” Vivienne says.

“(I would tell her that) one day, she will use her voice and her lived experience to make a difference through volunteering, advocacy and even contributing to epilepsy research. Most importantly, I would tell her that epilepsy will shape her, but it will not define her limits. She will go to university, chase big dreams and prove to herself that she is more than her diagnosis.”

Vivienne says her experiences with epilepsy have shaped her outlook and helped her navigate her career path. Once she completes university, she plans to attend medical school and become a doctor specializing in neurology. She says she wants to contribute to research and health-care initiatives aimed at improving quality of life for people living with epilepsy.

“Growing up with epilepsy has given me both a personal connection and a sense of purpose in this field,” she says. “I want to combine clinical care with research to improve treatments, reduce stigma and advocate for those living with neurological conditions.”

Vivienne’s passion in this area has already led her to get involved in epilepsy research at BC Children’s Hospital and the Centre hospitalier de l’Université de Montréal, where she has contributed to projects, including an analysis of epilepsy surgery outcomes.

Vivienne says epilepsy has motivated her to strive for achievements outside of academics, adding she recently created Viv in Purple, a social media platform to share her story of living with epilepsy and creating a space for others to share their experiences.

“The messages I have received from people who found hope through my posts remind me why I am committed to advocacy,” Vivienne says.

“Ultimately, living with epilepsy has not limited me. It has given me purpose and shaped my determination to turn personal challenges into opportunities to help others, whether through research, health care or advocacy.”

Vivienne is one of four recipients of Epilepsy Ontario’s 2025 scholarship. For more than 15 years, the organization has been providing scholarships to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to epilepsy.

“This $1,500 scholarship will help cover tuition and research-related expenses, allowing me to dedicate more time to my advocacy work and academic goals,” Vivienne says. “By combining my lived experience, academic background, and community involvement, I hope to create a more compassionate and supportive environment for people with epilepsy.”

Student uses epilepsy experience to guide health-care career

December 1, 2025


By Deron Hamel

Claire Marcotte says her epilepsy has made her resilient because the condition has forced her to be organized and disciplined.

A resident of Kincardine who is planning to study medical radiation technology, Claire says epilepsy has shaped her into the person she is today and even set her on her career path.

After being diagnosed with epilepsy, Claire says she realized that she would face challenges such as ensuring she had enough sleep, keeping her stress low and avoiding activities that could trigger seizures.

“Managing my seizures included organization, self-discipline, and time management,” she says. “I always had to plan when to take my medication, to say no to certain activities, and making sure I wasn’t over exerting myself. Naturally, all of these qualities fell into my life academically. I learned about balance, preparation, time management and prioritizing.”

Living with epilepsy has meant Claire has had to make frequent hospital visits and appointments with specialists, experiences that helped direct her towards a health-care discipline after high school, she says.

“Having different people help me made me realize that I would like to contribute to the health-care system,” she says. “I want everyone to feel seen, supported and wanted. I want to give a voice to those who are struggling with invisible disabilities.”

Claire says she has chosen to pursue a career in medical radiation technology because it will allow her to work directly with patients. Her own experiences undergoing procedures for epilepsy – such as CT scans, EEGs and MRIs – taught her that most of the professionals administering these tests have never been through them themselves, she adds.

“Every time I went, I would ask if they’ve ever done one before,” Claire says. “Most of the time the answer was no. In my case, I have done each scan so I know how the patient is feeling.”

After graduation, Claire says her plan is to work in a hospital to help patients who need scans, address their concerns and provide a level of comfort.

“I want them to feel seen and to know that they aren’t alone because I have been in their position,” she says. Claire is one of four recipients of Epilepsy Ontario’s 2025 scholarship.

For more than 15 years, the organization has been providing scholarships to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to epilepsy.

“Receiving the $1,500 scholarship will relieve some financial stress so I can put more effort and focus into my academics and advocacy for those who need help finding a voice,” she says.