Advocates bring epilepsy to spotlight in March

If someone you were talking to fell to the ground and had a seizure, what would you do?

It’s a question that most of us don’t need to address, but for friends and family of those with epilepsy, it’s an everyday reality.

March is Epilepsy awareness month, a period that a group of local volunteers is hoping will lead to a greater understanding of the still-mystifying ailment, which causes people to have seizures ranging from minor to major, in varying degrees of frequency.

“It really is a condition that most people are not comfortable with,” said Claudia Cozza, executive director of Epilepsy York Region, a non-profit agency. “(Epilepsy awareness month) is really to make people more aware, and make people understand what the condition is about—and also understand how to make someone who is having a seizure safe.”

Though educating people about epilepsy is a year-round goal for the volunteer-driven organization, March is when the campaign gets kicked into overdrive, complete with purple ribbons and countless boots on the ground.

“All of our volunteers spend a lot of time—a lot of hours—out in the community, telling people about epilepsy,” Cozza said. “We go out to so many different schools in the area, all across York Region… There are a lot of presentations that happen that month. We talk to the different children and teachers about epilepsy and what it is.”

Cozza noted that local businesses have also joined the campaign, with some distributing purple ribbons and even turning their websites purple for the month.

A public discussion is paramount, Cozza said, given how many myths and misconceptions about the condition exist.

“It is a condition that’s not spoken about very often,” she said. “There is a lot of stigma attached to it. It takes a lot out of somebody. (Apart from) the health side of things, it obviously affects their daily routine. The social side of it is huge.”

Though epilepsy is a neurological condition, many assume, because it manifests in the brain, that it is a mental illness.

Cozza said that the financial toll—with some families having to spend thousands of dollars each month on medication, or not be able to work because of seizures—is a huge consideration, as well.

Epilepsy is recognized province-wide in March, thanks to a local MPP.

Helena Jaczek, the doctor who represents Oak Ridges—Markham at Queen’s Park, brought the issue to the floor of the legislature a few years ago.

“As a physician, I have seen first-hand the effects of epilepsy and understand the need to bring attention to the more than 250,000 Ontarians directly affected by this brain disorder,” Jaczek said in a statement. “I introduced a bill in 2012 to recognize International Epilepsy Awareness Day on March 26 here in Ontario. I continue to work to raise awareness of the importance of epilepsy research and to address the stigma that is associated with this disorder.?”

In late February, Epilepsy York Region hosted a Night at the Boardwalk gala in Vaughan to raise funds for the agency’s programming.

What to do if someone has a seizure

• If it lasts longer than three minutes, call 911

• If they’re standing, prevent them from falling

• Move away anything that might injure them

• Try to position them on their side, rather than on their back or stomach

• Don’t hold the person down

• Don’t put anything—including your fingers—into the person’s mouth

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