01/24/2014 12:22 EST | Updated 03/26/2014 05:59 EDT

Undiagnosed Epilepsy Made People Think I Was Acting Out

It starts with the sensation of a light switch being pulled violently behind my eyes. I lose cognitive control quickly. I can't focus on even a simple task, and I forget what I'm doing while I'm in the middle of doing it. I could pick up a pen, then forget why I'm holding it. As the weight behind my eyes intensifies, my eyes roll into my head and start to flutter so rapidly it feels like they are going to pop out. This can last for a split second, a few hours, a few days, or a week.

I have epilepsy, a neurological disorder characterized by recurring, unprovoked seizures. The episodes I described are seizures -- they are simply misfiring neurons. Sometimes, these seizures are affected by the season. Other times, they are more easily triggered by stress.

I had my first Tonic-Clonic Seizure in December 1996, my Grade Six year. I fell unconscious into a snow bank in the parking lot of my elementary school. Many people are more familiar with this seizure's older name, Grand Mal.

I was diagnosed with Generalized Seizures that same year. This news left my family and teachers confused. I had never shown any signs of what they thought of as epilepsy, the violent shaking on the ground portrayed in movies and on TV. No one realized I had been having seizures for many years. Instead, they misread my childhood behaviour as misbehaving.

I frequently blacked out for split seconds in elementary school. The blackouts were likely Absence Seizures, a type of seizure that looks like daydreaming. Even though the black-outs happened on a regular basis, they were almost impossible to spot with an untrained eye.

In a Grade Three art class I blacked out and knocked over a cup of water that contained a few paint brushes. At the time, no one realized it was a Partial Seizure. When I came to, my teacher asked me why I had done that. She told me it was a disturbance to the class and I needed to watch my behaviour.

I had never even heard the word "seizure" before the age of 11. Without a reference point, these incidents in school seemed normal to me. As far as I was concerned, I didn't have seizures; I just needed to control my behaviour so I would stop getting in trouble at school.

There was no information about raising a child with Generalized Seizures available to families living with epilepsy in the late-'90s. My family and my teachers didn't know anyone with epilepsy who could help them figure it out. There were no community epilepsy agencies in our area at the time. Without available resources, we felt left in the dark.

Without a clear understanding of epilepsy as I grew up, it became difficult for me to talk about it with others in my life. As a young adult, I would often avoid discussing it with boyfriends, new employers, and new friends.

Globally, one in 100 people are diagnosed with epilepsy. It is one of the most common neurological conditions worldwide, yet public knowledge is extremely limited. Many people with epilepsy never talk publicly about their diagnosis fearing discrimination. Seizures and seizure first aid on television is often inaccurate. Myths and misconceptions about epilepsy persist.

This monthly Epilepsy Ontario column will provide insight into what it's like to live with epilepsy and fill that information gap. Each month, we'll feature guest columnists including neuroscientists, community support workers, advocates, and people living with epilepsy. These experts will challenge myths and misinformation about epilepsy, sharing personal stories and research.

Interest in epilepsy is growing. In 2010, the Government of Ontario announced $15 million over three years in start-up funding for the Ontario Brain Institute. In 2013, they renewed their commitment with an additional $100 million over five years. In 2012, the Canadian Government officially proclaimed March 26 Purple Day, an international day for epilepsy awareness. That same summer, Health Quality Ontario published a report declaring that epilepsy care in Ontario "varies from being non-existent to fragmented" and urged the government to fund a provincial epilepsy strategy.

The Ontario Government responded to the report by forming the Epilepsy Implementation Task Force. Globally, there is an increase in funding for brain research and brain mapping initiatives. These investments could dramatically change what we know about, and how we talk about, epilepsy.

Lack of information dramatically impacted my childhood and the way my family dealt with my diagnosis. It also caused me to feel that I was somehow personally responsible for my seizures. That was then -- no more.

We feel privileged to have this opportunity to contribute to growing epilepsy awareness on the world stage. Our column will provide a foundation of knowledge and offer a common language for the public discussion about epilepsy. Through this column, we call on you to join us in our campaign to raise global epilepsy awareness.

By: Gena Meldazy, Communications Manager at InteraXon


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