March 26 was Canada’s recognized day for Epilepsy awareness this year, but with escalating concern over the novel coronavirus taking hold of the nation at the time, the topic went largely unexplored.
Reaching out to The Record to share her perspectives on the matter, local high-school student Morgan Davis-Demers said that she would like to see more people come to understand the condition she lives with every day.
“There are a lot of people living with epilepsy,” Davis-Demers said. “I started having seizures when I was 12, but I only got diagnosed when I was 15.”
According to Epilepsy Canada, an average of 15,500 people learn they have epilepsy in this country every year, although stigma surrounding epilepsy and prejudice which has traditionally accompanied diagnosis leads the organization to believe that the true number of people with the disorder may be much higher because people are reluctant to admit it or to seek treatment.
“One in 100 people have epilepsy,” shared Karen Dymond, who also lives with the disorder. “Clearly, I have crossed paths with many people who have epilepsy but didn’t know it.”
Although there are several different large-scale organizations that advocate for epilepsy awareness in North America, Dymond and Davis-Demers shared that they met each other in a waiting room at the hospital rather than through some kind of organized activity or meeting.
“Until we met with Karen just recently, Morgane hadn’t had the chance to meet with anybody in this situation,” shared Heather Davis, the young woman’s mother. “The organization in Sherbrooke is really not that functional right now.”
Looking back on the road to Morgane’s diagnosis, both mother and daughter shared that there were bumps along the way. Epilepsy has a place in the popular imagination as a disorder of flopping around on the ground and an inability to look at flashing lights, but the Epilepsy Foundation offers a list of more than a dozen different kinds of seizures that can manifest in a number of variably obvious ways depending on the person and the circumstances.
See full story in the Tuesday, April 21 edition of The Record.
