Epilepsy awareness: A journey of strength and hope

Epilepsy Awareness 2022

March 31, 2022

Emily Toupin has a motto that motivates her daily – “Take it one day at a time.”

Emily was nineteen years old when she had her first seizure. When she woke up one morning, she noticed her shoulder was fractured. It was extremely odd since she had not fallen out of bed.

"It took quite some time for my family members to witness my seizures. Following that, a neurologist had to run multiple tests before I was diagnosed with epilepsy," she says.

Since then, Emily's life has taken a 180-degree turn. Feeling overwhelmed by the diagnosis, she decided to take charge and immerse herself in that unknown world that was epilepsy. Researching and reading about the topic helped in understanding her diagnosis.

Following more tests, Emily was diagnosed with a specific type of epilepsy called insular epilepsy. This rare condition mimics other types of epilepsy but seizures originate from a different part of the brain called the insula.

"Due to the complexity of my type of epilepsy and the number of seizures, my professional and personal life have changed drastically over the years. It has created more and more limitations,” Emily says. “As of right now, I cannot work due to my epilepsy not being under control. However, I look forward to the day when my epilepsy is better controlled so that I am able to work once again."

Breaking stigmas

Emily is grateful to the health-care teams at London Health Sciences Centre (LHSC) where she receives epilepsy care.

"The health-care team at LHSC is wonderful. Their role is so important to our epilepsy community. They are always so helpful, friendly and caring during visits. That is so important, as often people are nervous when they come for their appointments. It makes a huge difference when you have such compassionate staff," Emily remarks.

“LHSC has one of the largest and most comprehensive epilepsy programs in Canada,” says Dr. Jorge Burneo, Neurologist at LHSC. “Our unique multidisciplinary teams perform more than 100 surgeries each year.”

For Carmela Redhead, a registered nurse in Clinical Neurological Sciences at LHSC, it is a rewarding experience to care for epilepsy patients. Her favourite part is seeing patients benefit from a care plan that gets their seizures under control.

But Redhead often hears stories from patients about misunderstandings and stigmas.

"Both are linked to fear, and the only way to counter it is by educating people about epilepsy and seizures. There lies the importance of raising epilepsy awareness," Redhead says.

Purple warriors

Emily is now 31 years old. She enjoys going for walks in nature, creating various forms of art, spending time with her pets, and working on her garden. She has experienced numerous medication changes, tests, and multiple surgeries. Despite it all, she is proud of herself, as she remains strong and positive throughout her journey.

Emily is sharing her story to help people understand the experience of living with seizures, and to help those with epilepsy feel less alone.

"There are many other purple warriors that are here to help you. If you have been recently diagnosed with epilepsy, the Epilepsy Southwestern Ontario group here in London provides a lot of strength and support within our community," she says. “We've got this. We are the purple warriors, and we are brave."

March marks Epilepsy Awareness Month. Learn more at the Epilepsy Southwestern Ontario website