By Deron Hamel
TORONTO – Donovan Mckenzie says one thing stood out for him most while attending Epilepsy Action Day on April 8 at Queen’s Park: how little MPPs knew about epilepsy and its impact on people’s lives.
The good news is that when the day was over, MPPs had heard the stories of people living with seizure disorders and had a better understanding of how prevalent epilepsy is in Ontario, he says.
Donovan is a volunteer with Epilepsy Toronto and attended his first Epilepsy Action Day this year as an ambassador for the agency.
“It really opened my eyes,” he says of the experience. “A lot of people have heard the word ‘epilepsy’, but they don’t have a lot of knowledge about what epilepsy is. But I did feel that I was with a team of people that was able to spread the word and give them more knowledge.
“It was something that inspired me, but I was still in shock that people did not know all about epilepsy.”
It is estimated one in every 100 Canadians is living with epilepsy. This statistic was underscored by delegates at Epilepsy Action Day to help MPPs understand epilepsy’s impact, and Donovan says it was an important message to convey.
“There are so many people … in Toronto, in Ontario and in Canada, who don’t get the support they need, and I think the big issue was (the politicians) not knowing that,” he says.
Donovan says his favourite part of attending Epilepsy Action Day was hearing people share their stories about living with epilepsy to help others understand their condition – and doing so with smiles.
“Seeing people smiling made me feel … (that) I’m not alone; these people are happy and they have epilepsy, so that was the greatest thing,” he says. “We also let the politicians know that (epilepsy awareness) is important.”
Donovan says there’s a stigma attached to epilepsy, but raising more awareness about epilepsy could help break down preconceived notions about the condition. This, he says, extends beyond letting politicians know about epilepsy’s prevalence and impact.
For example, Donovan says he has mentioned Purple Day to people who know that every March 26 is dedicated to worldwide epilepsy awareness. These people know about Purple Day simply because their workplace acknowledges it. However, he has mentioned Purple Day to others who have never heard of it.
“That is something we need to address,” he says.
The purpose of Epilepsy Action Day is for representatives from Epilepsy Ontario and the community-based support agencies to meet with MPPs to discuss the needs of people living with seizure disorders and what role government can play to improve the quality of life for those living with the condition.
Epilepsy Action Day began in 2009.