Approximately one in every 100 adults in Ontario is living with Epilepsy, a chronic neurological disorder which can cause varying types of seizures and in 70% of cases the cause is unknown.
For Sara Woodhouse the journey of living with Epilepsy began when she was around 12 years old and had her first tonic clonic seizure. Tonic clonic seizures (formerly called grand mal seizures) are often what we associate with epilepsy as depicted in TV or movies in which the individual stiffens and begins convulsing. “I felt helpless,” expresses Sara’s father Andrew who was out of the country at the time, while Sara’s mother Gillian called 911, unsure of what to do or how to help Sara.
And like many families that helplessness and fear of the unknown continues as the person with Epilepsy tries to navigate life with a condition that has no cure and at times no explanation.
The stigma lived with Sara as the years went on. Even though her seizures were being managed well with anti-seizure medication she didn’t share her truth freely with professors as she began college. “I didn’t want to be seen as different in any way, I didn’t want special treatment…I probably should have talked more about it…me now, I would have, but me at age 18 didn’t want to share it.”
Sara’s seizures continued to be infrequent until she began having major seizures that landed her in the ICU during the pandemic. “Every time there’s a message or a phone call, my heart skips a beat because I think, ‘what’s happened?’” says Andrew.
It wasn’t until a few years ago that the family discovered and reached out to Epilepsy Toronto for resources and information to help navigate their emotions and what steps to take to better support Sara in the future. “Meeting other people with epilepsy and hearing how similar their stories are to mine is helpful, it’s a safe space to talk about our experiences.” says Sara. A thought both Gillian and Andrew echo, “You have to learn to live with the fear and make friends with that…it’s comforting to know other people going through it.” says Gillian.
Epilepsy Toronto does not receive any government funding, it is a not-for-profit charity that provides free support groups, resources, education and workshops to help those affected by epilepsy.
Sara does not let epilepsy define her, it’s something she has learned to deal with and with the help of Epilepsy Toronto she has gained more skills and a hopeful outlook on her future, and she wants to continue to spread awareness, “It’s not as scary as it looks, don’t be afraid.”
For more information about Epilepsy Toronto and the services they provide visit: epilepsytoronto.org
