A new support group in Sudbury expected to raise awareness of epilepsy the way March usually comes in – like a lamb. They didn’t know the response would come roaring in like a lion.
“I honestly had no idea that there was going to be the response there was,” says Leslie Moutsatsos, owner of P&M Kouzzina and co-founder of SEIZE (Sudbury Epilepsy Information Zone.)
“I thought we were alone in this fight. I just wanted our community to be more aware of the struggles that people living with epilepsy face.”
It began with a few phone calls to some supportive and community-minded local businesses, announcements about awareness campaigns to local schools and a Facebook group.
What it has become is a network of people struggling with the disorder and their loved ones coming together, to learn from each other, and to find a way to live their best lives.
As March, which is Epilepsy Awareness Month, has shown Sudburians with epilepsy, they are stronger together.
“I didn’t know there was a whole plethora of people wandering around with little to no support, no community of their own and almost no medical support here in Sudbury,” said Moutsatsos, whose son has epilepsy.
“I didn’t know the feeling of total acceptance and understanding when you meet someone just like you. I didn’t know the common frustration that permeates the day to day struggles of living with epilepsy or loving someone who is epileptic. I just didn’t know. Now I do.”
The awareness campaign — with raffles and special promotional items running all through March — culminated in the internationally-recognized Purple Day for Epilepsy on March 26.
Everyone was asked to wear purple to raise awareness of the disorder, and Sudbury did not disappoint. After a presentation from two SEIZE members at MacLeod Public School, the students and staff pulled together to create a memorable purple day. “Bringing the Epilepsy presentation to the school was a great way to raise awareness of the disorder to the students,” says Brenda Johnston, education assistant at the school.
“We’re wearing purple to show our support for students who have epilepsy, and to encourage our students to have empathy and a greater understanding of the challenges of others.”
Many local businesses displayed purple balloons or had employees sport the colour, and the staff at RBC Royal Bank in New Sudbury dressed for awareness after a presentation from SEIZE.
Bank staff learned about the aims of the group and the sheer number of people living with the disorder: 1 out of 100.
“Our RBC New Sudbury location is excited to join other local businesses and community members across our community in raising awareness of Epilepsy Awareness Day,” says RBC Community manager Faith Salmaso.
“It truly takes a village to ensure we all have access to the care, sensitivity, and a sense of belonging that we all deserve.”
Now that the awareness campaign is coming to a close, SEIZE hopes to continue to educate those in the community, as well as support those living with the disorder. Moutsatsos said anyone looking to keep up with the group can follow its page on Facebook, or email firstname.lastname@example.org.
There will be more events, opportunities to have presenters come to your school or business, and the hopes of offering Sudburians with epilepsy more information about health care and treatment options.