March is Epilepsy Awareness Month in Canada and it is the perfect time to learn more about this somewhat mysterious disease that touches one in every hundred people.
“What a lot of people don’t understand is that the physical symptoms of epilepsy are often not the most difficult thing about having epilepsy,” explains Tina Ng media administrator for Epilepsy York Region, “it’s the isolation and stigma that come with them.”
Epilepsy is a long-term disease that causes repeated seizures due to abnormal electrical signals produced by damaged brain cells. When there is a sudden burst of uncontrolled electrical activity within the brain, the result is a seizure. Seizures can range from nearly imperceptible changes in awareness to full-body muscle spasms. The latter can be quite intense for all involved. Much of the stigma and isolation surrounding epilepsy likely stems from fear of these large, public, and sometimes difficult seizures.
“Imagine having to deal with it alone,” says Ng, “or while feeling alone. We want to end the isolation and stigma.”
This is why March has been named Epilepsy Awareness Month in Canada. Organizations like Epilepsy York Region want individuals to take the opportunity to be aware of, learn about, and maybe even connect with someone who has been touched by epilepsy.
The month features several initiatives that are aimed at epilepsy education, epilepsy awareness, building support through community and advocating on behalf of those with epilepsy. Epilepsy York Region is offering presentations to schools, libraries, and other institutions about epilepsy. These are available by reaching out to EYR via their website, https://epilepsyyork.org/.
“We also get proclamations from all the municipalities that can give them,” says Ng. “This really helps raise the profile of awareness during the month. Additionally, some landmarks get lit up in purple for the month. Look for Vaughan City Hall, Fred Lundy Bridge in Newmarket, and the Georgina Civic Centre to be lit up in purple.”
The centrepiece of Epilepsy Awareness Month is Purple Day on March 26th. Started in 2009 by Canadian Cassidy Megan, who was inspired by her own struggles with epilepsy, the goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.
“There are those that say the colour purple was chosen because it has a calming effect for some,” explains Ng, “but there is no official reason”
The basic idea is that people around the world are invited to wear purple and host events in support of epilepsy awareness on March 26th. Last year, people in more than 85 countries on all continents participated in Purple Day. However, Canada is the only country in the world who officially recognizes Purple Day through the Purple Day Act implemented on June 28, 2012.
“Epilepsy can happen to anyone at any age,” says Ng. “It’s not contagious and it’s not necessarily caused genetically either. About 1 in every 100 people experience epilepsy.”
Given how common the condition is, it is certainly problematic how little information is shared about it. The result is a perception that the disease is more debilitating than it is in truth.
“Lots of people with epilepsy go on to do extraordinary things,” says Ng. “This is why the I am 1 in 100 campaign has been so important.”
EYR along with the Canadian Epilepsy Alliance (CEA) and epilepsy agencies across Canada launched this campaign as a way for those diagnosed with epilepsy to show what it means to live with epilepsy and that they are defined by more than the disease. The testimonials are then shared with the hashtag #Iam1in100.
“More than anything else, I would just say that people should be a friend when they come across someone who’s been touched by epilepsy,” says Ng. “It’s the understanding, and the acceptance, and compassion that makes all the difference in the world. If you need to more, reach out to us.”
Events for Epilepsy Awareness Month run throughout March.
Visit epilepsyyork.org for more information.