March is Epilepsy Awareness Month. Epilepsy is a brain disorder causing recurring seizures that are unprovoked.
Advocates with the Canadian Epilepsy Alliance say the national campaign has been overshadowed in recent years, sharing the same anniversary of the COVID-19 pandemic.
The organization says while demand for services like therapy, education and other supports has risen 30 per cent since COVID, it currently does not receive funding from the provincial government.
“The government is neglecting us, and neglecting that this is a financial burden. It is a burden on 300,000 Canadians and their families,” says president Cynthia Milburn.
Living with epilepsy, 28-year-old Alexander Johnson gets seizures on a regular basis. He says it all started when he was a kid.
“I was a big athlete at my school,” he told Global News.
“I had really high grades as well, and then all of a sudden one day in gym class I had my first seizure and everything just gradually went downhill from there.”
Johnson’s life was turned upside down, with his dreams of playing sports dashed. His adult years haven’t gotten any easier.
“The element of freedom is my biggest challenge,” he said. “Being 28 years old and not being able to live on your own, being able to drive around, being able to hang around with your friends and go drinking and go to the club because you’re photo sensitive so you can’t go with your buddies.”
His experience is not unique. According to the Canadian Epilepsy Alliance, one in 100 people live with the seizure disorder. In addition to funding to meet critical needs, the organization is also petitioning for first responders to be better trained on responding to epileptic seizures.
It comes after police used a taser to restrain 27-year-old Marcus Charles who was experiencing a seizure at his workplace in Hamilton last year. He was later charged with assault. Epilepsy training is currently not a mandatory course for police.
“We want to make this course mandatory so that when someone has a seizure they’re not tazed,” says CEA spokesperson Trevor Gordon.
As for Johnson, living with epilepsy has ignited his passion for music and writing. He also serves as a camp councillor for youth who also have the condition, inspiring them to not let it define them in life.
“It means a lot because you’re helping other kids. Other kids that other camps won’t take because they have epilepsy,” he said.
“It’s a good feeling. Just seeing the smiles on the kids’ faces knowing when they go home, and hearing their parents say, ‘They had a good time,’ just makes you feel really special.”
The organization also wants to remind the community that March 26 is Purple Day. Agencies across the country will light up landmarks in their area to mark the annual occasion, which aims to raise awareness and funds for epilepsy.
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