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Inside Epilepsy: Answering a call to action

Fourteen-year-old Cassidy Megan, who has epilepsy, came up with the idea of an epilepsy awareness day in 2008.
Fourteen-year-old Cassidy Megan, who has epilepsy, came up with the idea of an epilepsy awareness day in 2008. Global News Supplied Photo

TORONTO – Wendy Morris was pregnant 11 years ago when she had a seizure severe enough that she needed to be hospitalized.

Her seizures were serious and steadily occurring – almost daily for the rest of her pregnancy.

“At one point, 19 seizures in one month,” Morris said. “And I couldn’t take care of my son.”

The 45-year-old didn’t know what had happened and was fearful. “It was very scary,” she says.

“I found out two weeks after that it is epilepsy, and there came a big change in my life.”

“I was angry with this unknown illness that I never once thought would touch me,” Morris said. She lost touch with good friends who drew away from the relationships they had with her.

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Meanwhile, Morris continued to have difficulty with the diagnosis.

For Morris, it was time to seek help, “in order to understand what epilepsy was all about, and realize there’s other people suffering from this and I’m not alone,” she said.

March 26 marks epilepsy awareness day

It’s for that reason that Purple Day for Epilepsy is celebrated on March 26 every year, a day to raise awareness of epilepsy and those who live and cope with the disorder each day. It’s also meant celebrate stories of success as they emerge.

Fourteen-year-old Cassidy Megan, who has epilepsy, came up with the idea in 2008.

“I’m really proud that a lot of people know and are aware of what to do,” she told Global News.

Fundraisers, parties and purple fashion shows are all part of the fun.

The campaign invites people the world over to wear purple in a show of support for the 65 million people around the world who have epilepsy. The Canadian federal government even passed the Purple Day Act in 2012, confirming March 26 as the official day of Canadian epilepsy awareness.

Daryl Yeo is chair of Epilepsy Toronto, an organization that offers help to Torontonians experiencing difficulties with epilepsy. “The reason I got involved with Epilepsy Toronto is I have a daughter who has had epilepsy for a good part of her life,” he said. “She’s fortunate she’s able to live fairly independently.”

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The not-for-profit group is one of many local organizations across the country committed to providing information and support for people with epilepsy but are always having difficulties finding money.

“We have lots more services that we can provide,” Yeo suggests. “So we are basically always looking at how we fund ourselves.”
Scotiabank Buskerfest takes place every fall with the hope more people can contribute while being entertained.

Even with organizations like Epilepsy Toronto spearheading efforts to increase awareness, common knowledge and acceptance of epilepsy is still lacking in certain areas.

For Morris, it’s been important for others to understand.

“I’m not the only one who has this illness,” she said. “I realized that, ‘Okay, so I can get back.’”

Epilepsy in Canada

Epilepsy Canada says that about 0.6 per cent of the population has epilepsy. This includes anyone who’s had a seizure in the past five years.

It’s the third most common neurological disorder in adults after stroke and Alzheimer’s disease, according to the University Health Network.

Each day, about 42 people are diagnosed with the condition, according to the organization. That’s about 15,500 people a year, on average.

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But the numbers could be higher.

“Due to stigma surrounding epilepsy and the prejudice with which society has historically treated people with epilepsy, many with the disorder are reluctant to admit it or to seek treatment,” the website says.

About 44 per cent are diagnosed before the age of five, but half of these cases dissipate completely. It’s the most common neurological disorder in children.

How to help the cause

Many of the organizations that offer support to those with epilepsy and their families are non-profit groups that rely on donations from the community.

With Epilepsy Toronto, Canadians can make a general donation, donate in honour of a loved one or donate in memory of someone, according to its website.

Click here to get involved with Epilepsy Toronto.

You can also donate or fundraise for Epilepsy Canada here.

Today’s story marks the end of a five-part series called Inside Epilepsy.

Part I: Inside Epilepsy: Learning more about the condition

Part II:Inside Epilepsy:Patients turn to brain surgery for treatment

Part III:Inside Epilepsy:Toronto woman’s crusade to shed light on treatment options

Part IV:Inside Epilepsy:Program offers support, learning for those living with epilepsy

Global viewers and readers shared their stories with us on Facebook, through the hash tag #InsideEpilepsy on Twitter and via email.

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Read more about Mark McAllister’s story here and about the series here.

Toronto woman Whitney Goulstone also uses donations to run her cause, Whitney’s Wish: A seizure free future.

mark.mcallister@globalnews.ca