Skip to content

Isolated: If 1 in 100 Canadians have epilepsy, why have I never met another person with the disorder?

March is Epilepsy Awareness Month and writer Jenny Lamothe said people with epilepsy often feel isolated and alone; now, she and two other people impacted by the seizure disorder have come together for outreach and awareness

The No. 1 question I get when I tell people I have epilepsy is, “Do you smell burnt toast?” 

There you go, Heritage Minutes, now you know you got your message out. We all know of Dr. Wilder Penfield.

But honestly, if that many people ask me that question, perhaps we need to know a little more about epilepsy.

I have had epilepsy since I was 13 years old. And if you can believe it, in all those years, I have only ever met one other person with the disorder.

But how can that be? If 1 in 100 Canadians suffers from epilepsy – more people than those living with autism spectrum disorders, Parkinson’s disease, cerebral palsy and multiple sclerosis combined – we must be everywhere. But in the, well … let’s satisfy my ego and go with “few” years since my diagnosis, I have heard many people tell me they know someone with epilepsy, but I have personally met just one man.

That is until recently. I wrote an article, and in meeting the family featured in it, I was connected to Leslie Moutsatsos, co-owner of P&M's Kouzzina in New Sudbury, and mother to a son with epilepsy. If you know her, you know that once given a task she breaks down every wall necessary to get the job done. And when it comes to her child, look out. 

It’s important to know epilepsy is not a disease and it’s not contagious. There also isn’t a set series of symptoms, the same diagnosis and cause for everyone. Epilepsy means you have seizures, one or more of the many different types, and that’s about all that connects patients with the diagnosis. 

For instance, my epilepsy is connected, we think, to a head injury. The timelines match, but as with many things in medicine, we can’t be sure. 

Moutsatsos’ son, Troy, has schizencephaly – a rare congenital brain disorder that causes seizures, among many other symptoms. But like many people with epilepsy, Troy has learned to live – and live well – within his limitations. 

Moutsatsos does wonder though what their journey would have been like if there were supports – awareness even – of the disorder. It might have prevented her from blaming herself, she said. 

“As a mom, I retraced every day of my pregnancy to see if I could remember what I did to cause this in my baby,” Moutsatsos said. “I worried mostly for his wellbeing, not so much physically, but how he was going to handle the ‘this is for life’ sentence.”

It wasn’t until her son was in Grade 11 Moutsatsos met someone who shared her and Troy’s struggles. 

“We discovered that a business associate had a son the same age as Troy suffering from seizures,” she said. “Through conversation, we discovered that they not only went to the same school, but shared the same pediatrician. Looking back, how great would it have been if the doctor had something for us to grasp onto? How nice it would have been to visit with another mom that was going through the same thing.”

Moutsatsos got in touch with me, and introduced me to Jamie Suban, who also has epilepsy. In 2015, Suban put together a Facebook page for Sudbury Purple Day – an annual celebration on March 26, supported by epilepsy charities and organization around the world. Suban and I were excited to speak to each other – I was the only other person with epilepsy she had ever met.

This isolation and lack of information is the same for us all. 

“I had no idea what I was dealing with, had nothing to compare my situations and symptoms with and felt stuck,” Suban said. 

“It was me and doctors, no in between. There was nothing in the community when I did try and reach out to find someone. Although I could only offer so much support on my own, I wanted to make it available.”

And now that we’ve found each other, we want to find others as well. We want to hear the stories of those with the disorder, and from their families and friends. So much so, we started a group, and this group is about to take March by storm. Say hello to SEIZE – Sudbury Epilepsy Information Zone. We can be found on Facebook at SEIZE, on Instagram we are SudburyEpilepsy, and by email sudburyepilepsy@gmail.com. If you have questions, need support, or just want to find out what the disorder can be – beyond seizures – pay us a visit.  

You can also take part in one of the many events and promotions taking place across the city this month. 

March is Epilepsy Awareness Month, and purple is the official colour of the events. There will be menu specials at P&M Kouzzina. Right now, you can bid on one of three tattoos from Pricked Tattoos. If the promotional events can raise $5,000, Moutsatsos will be getting a tattoo herself.  All of the funds raised will be going to research, and more details about this and the many March events around the city can be found on our social media. 

It all culminates on Purple Day for Epilepsy on March 26, when we’ll be asking everyone to wear purple to show their support, and help us begin this much-needed conversation, and to find each other.

If you would like to set up an event, please contact us, we’d love to have your support. If you want to show your support online, use our chosen hashtags: #purplesudbury, #SEIZE, #sudburyepilepsy, and just because it’s important to laugh, Troy Moutsatsos gave us #shakinlikebacon. 

We are even hosting a competition! See how purple you can go — from head to toe — then send us your photo with the hashtag #purplesudbury.  

If those of us who have epilepsy can’t find each other, it doesn’t bode well for a community to appreciate the limitations – and capabilities – of those with the disorder. This March, wear purple to help start conversations, and enjoy taking part in the many activities around the city, knowing you are advancing understanding.

And if you have epilepsy, reach out to us. You don’t have to be alone anymore.

Jenny Lamothe is a freelance writer, proof-reader and editor in Greater Sudbury. Contact her through her website, JennytheWriter.wordpress.com.