March 26 marks Purple Day around the globe, dedicated to raising awareness about epilepsy.
In 2008, the founder, Cassidy Megan, then 8-years-old, was motivated by her own struggles with epilepsy and decided to get people talking about the disorder.
With the support of The Epilepsy Association in her home province of Nova Scotia, Purple Day was formed.
“In a way, this little girl has started a momentum for us that have helped bring us together and consolidate us, we have established a national alliance with epilepsy organizations from coast to coast,” said Geoff Bobb, the executive director of Epilepsy Toronto, to Humber Radio.
“More importantly it has provided people living with epilepsy across the country a sense of belonging with one another and a sense of community,” he said.
Tiffany Barnes, 25, from London, Ont., is one young Canadian living with epilepsy who is currently participating in Purple Day activities.
Brenda Barnes, Tiffany’s mother, talks about caring for her daughter, who had seizures since she was a child and who was officially diagnosed with epilepsy at 17.
“It’s still a hidden disease, people still think it’s contagious, you’re not intelligent, and other things,” said Barnes. “She still gets some nasty comments like someone called her a freak, and there is still these nasty comments out there because some people are just uneducated about it.”
“Epilepsy it can be a really alienating experience for many people with seizures they really struggle with the stigma that had long been enshrouded with the disorder,” said Bobb. “People lose their jobs because of epilepsy, kids get left out of activities because they have epilepsy, it can be a really isolating and lonely experience.”
Epilepsy has been surrounded by various stigmas and misconceptions before the disorder even became known as epilepsy, Bobb said.
“There is a dramatic lack of awareness with epilepsy, and not just here in our community and nation, it seems to be a worldwide phenomenon”, said Bobb. “It goes back to a time when epilepsy was associated with demonic possession, there are a lot of mysteries and misinformation that surrounds the disorder.”
“We feel one of the challenges as an organization is to debunk the myths and stereotypes and promote more of an awareness,” he said.
Janice Fennel, a disability consultant at Humber’s North campus, said these stigmas and myths cannot be talked about without talking about culture.
“I consult a student that is of African background and in her culture, epilepsy is associated with evil spirits – it’s seen as almost God is punishing you for something you’ve done,” said Fennel. “So someone from that culture, they internalize those sociocultural perceptions and that frames their response to being diagnosed with epilepsy.”
Fennel said these perceptions are flawed because it makes them afraid of sharing their disorder with other people, which stops them from speaking out and educating the public about what epilepsy is.
The consultant also said that another aspect of epilepsy which leads to lack of awareness is how it is an invisible disorder.
“I can’t look at you and know that you have epilepsy,” said Fennel. “So people who struggle with an invisible condition, they want to keep it a secret or want to keep it out of the spotlight – they think, are people going to treat me differently?
“There is always the stigma which becomes even more complicated with invisible disabilities,” she said.
At Humber, there are services available to help students with epilepsy.
“One main accommodation [for students with epilepsy] is extra time on tests, because some students, their seizures are stress induced and knowing they have a little more time will reduce that stress,” said Fennel. “Another thing [we provide] is audio recorders and note takers, as [students with epilepsy] like to have the security of someone writing their notes.”
To raise awareness about epilepsy in Toronto today, there are various events throughout the city including greeters in subways who give out purple ribbons, a scavenger hunt and party at the Eaton Centre, along with purple day fashion shows, and art exhibits in major hospitals, said Bobb.
The executive director said that the most incredible thing about Purple Day is how it became a global phenomenon in just a few years.
“It has become far reaching and international, for me it is really important because it has branded epilepsy in this nation and it has helped bring us all together.”