Tag Archives: Ontario

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.”

Pharmaceutical companies need to explain why drug shortages occur in order to prevent them

February 4, 2016

By Deron Hamel

Stakeholders would be better positioned to offer solutions to prevent medication shortages if pharmaceutical companies provided public explanations about why shortages happen, says Suzanne Nurse, Epilepsy Ontario’s director of information and client services.

Following public consultation in 2014, the Canadian government announced it would be mandating the country’s pharmaceutical manufacturers to publicly announce medication shortages. Mandatory reporting is not in place yet, but even with compulsory reporting, processes need to be in place to prevent shortages of lifesaving medications, Nurse says.

Currently, six medications manufactured by Apotex that are commonly taken by people with seizure disorders are in short supply. These are divalproex, clobazam, levetiracetam, lamotrigine, pregabalin and topiramate.

There’s no explanation for the shortages, Nurse says. Lack of active ingredients, Canadian generic medication pricing policies and global factors have been proposed by some experts as possible causes of shortages, “but it’s all just speculation unless the manufacturers come forward and explain what is going on,” she says.

Shortages of epilepsy medications are “terrifying” for people needing the drugs and their families because of the health and safety risks, Nurse says, adding this is the third time in recent years clobazam, an anti-seizure medication, has been in short supply.

If public explanations were provided when drug shortages occur, stakeholders – whether independent agencies or government organizations – could play a part by working with others, nationally and internationally, to prevent shortages or to mitigate their impact, Nurse says.

For instance, providing explanations for drug shortages would allow global health-care regulators to work together to obtain ingredients that might be in short supply in one country but not in another.

Epilepsy Ontario and other advocacy organizations could play a role by creating dialogue with drug manufacturers to underscore the impact certain medications have on people’s lives, Nurse says.

“When we don’t know what’s happening, it makes it difficult to figure out what needs to be done to prevent it,” she says.

“Knowing what the biggest factors are behind shortages would help us identify what needs to be done to try to prevent them from happening.”

Mandatory reporting will give the public notice of which medications are in short supply, but without an explanation, it’s just a drug’s name on a list, she adds.

“The impact and the personal experience is lost,” Nurse says. “One of the roles Epilepsy Ontario plays is making sure that all the stakeholders that are involved in this issue are aware of how serious (drug shortages are) and how terrifying this is for people living with epilepsy.”

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.

Webinar focuses on coping strategies for epilepsy-related memory challenges

May 16, 2014

An upcoming Epilepsy Ontario-hosted webinar will focus on developing strategies for improving memory function for people who have a seizure disorder.

The webinar, called Epilepsy and Memory: Coping Strategies, will feature guest speaker Dr. Brent Hayman-Abello, a clinical neuropsychologist at London Health Sciences Centre. The May 22 webinar is the third instalment in Epilepsy Ontario’s Knowledge is Power series.

Hayman-Abello says the webinar will be “very beneficial” to people who are affected by epilepsy and other seizure disorders and experiencing memory issues. He’ll largely centre on specific strategies and techniques to help improve everyday memory functioning and ways to work around memory difficulties.

The webinar also welcomes friends and family members of people living with a seizure disorder so they can help people experiencing memory problems work through them, Hayman-Abello adds.

“I think the webinar will help people understand that they don’t have to put up with having memory difficulties and that there might be some pretty simple ways to work around memory difficulties that people are having,” he tells Voices of Epilepsy.

“(The webinar) will be very beneficial to people who are affected by epilepsy; whether they are people that have epilepsy or friends and family members of people who have epilepsy, so that they can understand the issues and maybe help share the information.”

Hayman-Abello will also speak about the definitions and descriptions of memory, as well as factors that can affect memory for people with epilepsy.

Hayman-Abello notes that not everyone with a seizure disorder has memory challenges stemming from their condition. That said, memory difficulty is a common issue for people with epilepsy, he says.

“People might be surprised that there are different kinds of memory problems, that they can come from a lot of different areas, and some are easier to work around than others,” Hayman-Abello says. “If people are having memory problems, sometimes the memory can’t be fixed, but you can work around it.”

The Epilepsy and Memory: Coping Strategies webinar is being held Thursday, May 22 from 7 p.m. to 8 p.m.

To register, e-mail gula(at)epilepsyontario.org. To join the webinar by telephone, call 416-764-8662/1-888-884-4534 and enter participant code 7605062#. To join via Internet, login at http://ontariobraininstitute.adobeconnect.com/epilepsy-memory/ and click on the “Enter a Guest” icon.

Writer: Deron Hamel

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. You can also leave a comment below.