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Sharing your story about epilepsy can make a difference

One of the great things about having the Voices of Epilepsy news program is that Epilepsy Ontario can help people share their inspirational stories about how they’ve conquered their condition and, in some cases, foster positive change.

The news program has even demonstrated lifesaving ability.

In January 2013, it was announced there was a shortage of clobazam, an anti-seizure medication. Daryl Yeo, president of Epilepsy Toronto, received an e-newsletter from Epilepsy Ontario about the shortage — a situation he had not heard about.

Upon learning of the shortage, Daryl called his daughter, Lindsay, to let her know she needed to contact her pharmacy to get more information about the shortage. It turned out the pharmacy was out of stock.

While Lindsay eventually obtained the medication from another pharmacy, Daryl says it was only because of Epilepsy Ontario’s e-mail alert that she found out in time.

“If I hadn’t got the notice from Epilepsy Ontario giving us the heads-up, Lindsay wouldn’t have found out until probably a couple of days ago,” Daryl said at the time, adding that if people needing a medication only find out about shortages when they go to refill their prescription it can be too late.

Then there are the personal stories of triumph.

Such is the case of Peterborough resident Kerry Jenkins, who, after suffering tonic-clonic seizures for 12 years, had deep brain stimulation (DBS) surgery that changed her life.

Following the DBS surgery in December 2012, Jenkin’s tonic-clonic seizures stopped and she had approximately eight temporal lobe seizures per month. Of these, there were four different types of seizures. The DBS surgery has stopped two of the four types of seizures completely and reduced the number of seizures to approximately three per month.

Jenkins shared her story with Voices of Epilepsy to inspire people and to let others affected by seizure disorders know there is always hope.

“No matter how bad it gets, it can always get better, you just have to keep going,” Jenkins said. “Even though you have to go through a lot . . . things do get better — you just have to keep trying.”

Last October, 27-year-old Chelsea Kerstens accomplished something few will ever do — she scaled a 4,500-foot side of the Grand Canyon as part of Epilepsy Durham Region’s Epic Climb. The event was designed to raise awareness of epilepsy.

But for several years, Kerstens, who has epilepsy, was unable to participate in many activities because of her condition. This changed when her doctors discovered a combination of medications that caused her seizures to stop — permanently.

Today, Kerstens is an epilepsy awareness advocate.

“It’s an excellent feeling,” she said of her work in November. “The only way I can describe it is that it feels like I’m doing what I’m meant to be doing.”

Do you have an epilepsy story to tell? Have you experienced challenges you have had to overcome? Maybe you are struggling with an issue right now that you would like to share with others? Do you know of an employer or organization that has gone the extra mile in accommodating people living with seizure disorders? How about a teacher that who has worked hard to support a child in the classroom?

One response on “Sharing your story about epilepsy can make a difference”

Rob Jamieson: I have been a Police Officer with the Ontario Provincial Police since 1995.I am currently one of 6 Recruit Training coordinators, the Provincial Training coordinator for domestic violence and sexual assault training with the Provincial Police Academy. Shortly after being hired in 1995 I experienced tonic clonic seizures and was later diagnosed with adult onset Epilepsy.

I have lost my drivers licence on 3 separate occasions and have been on anti-convulsant medication since December 1999. I have been seizure free for 10 years, however, it has not been without its challenges. When I moved to Barrie in 2003, I later joined Epilepsy Simcoe County and Area and was a Board of Director member for a period of time in an effort to give back..

I have been very public and open, and I don’t know why today I am writing to you, however, when I read other people’s stories I don’t feel alone and in some ways very fortunate.

I have never wanted to take, but moreover, be a role model for others who may have challenges. I am not aware of any other Police officer in the OPP who has Epilepsy.source

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