A documentary screening in Toronto this month will provide viewers a first-hand glimpse of what it’s like to live with epilepsy and how seizure disorders can alienate people, lead to anxiety and depression and create a detrimental impact on lives.

This may sound unsettling but that’s exactly the reaction people need to have to better understand the challenges those living with epilepsy face, to break down stigma, and to raise awareness of its seriousness beyond the community of people affected by seizure disorders, clinicians, researchers and support agencies, says Rozalyn Werner-Arcé.

Werner-Arcé, Epilepsy Ontario’s executive director, adds that while everyone could take something away from seeing On the Edge: Living with Epilepsy, it would be especially beneficial to people who do not have epilepsy and do not know someone with the neurological disorder.

This is because of the impact epilepsy and seizure disorders have on people; how it affects employment, education and personal lives goes beyond the individual – it affects family, friends, educators, co-workers and others that they may interact with.

Seeing the documentary will help people better understand those struggles, and how every one of us can play a part in building awareness and support for individuals living with epilepsy, she says.

On the Edge: Living with Epilepsy was written and directed by Louis Stanislaw, a U.S. filmmaker who has epilepsy. The film is told through his eyes and also shares the stories of people who have epilepsy and their families.

It tells the painful truths, misunderstandings, and difficulties of living with epilepsy at every turn; from family life to school, to leaving home, and starting a career and forming lasting bonds.

The documentary also highlights the medical and social progress being made.

For people who are affected by epilepsy, the film sends the message that there is a large community of people dealing with the same issues as themselves — and that’s a good thing, Werner-Arcé says.

“By knowing that there is a community of people with epilepsy out there, and that support is available through local epilepsy agencies, it helps build strength and resilience for those facing difficult challenges and isolation,” she says. “(The film will also help) bring voices together around advocacy and break down stigma.”

On the Edge: Living with Epilepsy will have its Canadian premiere screened at St. Michael’s Hospital’s Li Ka Shing Knowledge Institute on Oct. 23. The screening will include a facilitated conversation with Stanislaw as well as with researchers, clinicians and other guests. A reception will follow.

The screening is free but people need to register. To register, click here, then scroll down the page and click the “reserve tickets” button.

Click here for more information about the documentary.

Writer: Deron Hamel

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