Putting a positive spin on epilepsy awareness

Twenty-two-year-old woman with epilepsy hosts fundraising event in Burnaby on March 22

Jacquoline Martin has been suffering from seizures since she was three months old. She’s lived with the stigma of having epilepsy her whole life, which is why she created an event to put a positive spin on it.

The 22-year-old is hosting an event for Purple Day, which is the international day for epilepsy awareness, on March 22 in Burnaby.

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“I was actually denied daycare when I was younger because I had epilepsy,” she said. “A lot of people become unemployed because of epilepsy. Employers don’t want to risk or take chances because someone is epileptic. It’s really not fair. I want to fight for that.”

Martin says she knew a firefighter who lost his job because of a concussion he sustained that resulted in him having eight to 10 major seizures a day.

“After being a fireman for 15 years, you can imagine that’s very devastating for him,” she added. “I fight for people like that.”

Although Martin is on the right medication, she still suffers from tonic-clonic seizures, when the body shakes and she loses consciousness, a few times a year, but gets petite mal seizures every day.

“My eyes roll back into my head, and it lasts for two to three seconds,” she told the NOW, about her petite mal episodes. “I can be in the middle of a sentence, and I’ll lose my train of thought. Because of all this, I’m not allowed to drive a car, and I might not be allowed to give birth.”

Martin said she tries not to let all the negative aspects of epilepsy take over her life, and that’s why she lost 150 pounds, became a registered weight trainer, goes to school to become a nutritionist, and is hosting an event to fundraise for epilepsy research.

“If you honestly look at all the negatives, you push yourself down,” she said. “You have to keep moving forward. You just keep striving, keep looking at the positive.”

Martin moved to Burnaby from Ontario nearly two years ago, and after selling cupcakes last year for Purple Day, she took a $250 gift card and turned it into a whole event.

She won the card in a Metropolis at Metrotown contest. When she was asked what she’d spend the money on, a charity event for epilepsy, the mall hopped on board as the first sponsor.

“From there it just grew and grew and grew,” Martin added.

The B.C. Epilepsy Society has since become a partner in the Burnaby event, called Feeling Fine for Epilepsy, according to Elvira Balakshin, program and communications coordinator for the society.

“The thing about epilepsy we always stress is it’s not just a medical condition,” she told the NOW. “Unfortunately, epilepsy is often misunderstood and causes problems for people who have it.”

Epilepsy is more common than Parkinson’s disease, multiple sclerosis, stomach cancer and Down syndrome,  with more than 40,000 people in B.C. and 300,000 in Canada living with it. It can develop at any age and in many situations it can last a lifetime.

“People with epilepsy and their families could face social isolation or unnecessary restrictions, exclusions from school and work activities,” Balakshin said. “Luckily, there’s a lot more medications, effective medications that can help control (seizures).”

But those who don’t get much help from medication face employment, recreational and transportation issues, to name a few, Balakshin said.

“Just because you have epilepsy doesn’t mean you should be limited from typical activities,” she added.

There is no cure for epilepsy, which is why fundraising events exist, and March is epilepsy awareness month in Canada.

The event is on March 22, from 9 a.m. to 1 p.m. at the West Burnaby United Church, 6050 Sussex Ave.

The event starts with a build-your-own yogurt parfait bar, a tea sampling with David’s Tea and a hatha yoga session with Angela Ringstead of Fitness 2000. There will also be an information presentation by the B.C. Epilepsy Society, refreshments and prize draws.

Raffle tickets are $2 a ticket, $5 for three tickets and $15 for 15 tickets. Prize values range from $25 to $100.

Facts about epilepsy:
- It’s a medical condition that causes a person to have recurring seizures, which cause excessive discharges of electrical impulses in the brain.

- There are more than 20 types of seizures, such as tonic-clonic, formerly known as grand mal, that can cause a complete loss of consciousness and shaking of the entire body.

- Known causes include brain injury, stroke, infections that damage the brain, brain tumours and abnormalities in brain development.

- Potential causes are thought to include genetic disorders, neurotransmitter imbalances, gene mutations and cell membrane abnormalities.

- About 70 per cent of epilepsy cases have no known cause, while 30 per cent can be linked to a cause.

- About 65 million people suffer from epilepsy worldwide.

Follow Stefania on Twitter, @stefania_seccia

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