When Chelsea Kerstens scaled a 4,500-foot side of the Grand Canyon as a participant in Epilepsy Durham Region’s Epic Climb in October, it was one more challenge she successfully met in the 13 years since she had her first seizure.
Following her accomplishment, Kerstens, 27, spoke with Voices of Epilepsy, reflecting on the challenges she has faced since she was 14 and how her experiences led to her becoming an advocate for epilepsy awareness with Epilepsy Durham Region.
Kerstens had her first seizure at 14, but her condition went undiagnosed until she was almost 18. Once diagnosed, she faced the challenge of finding the correct medication to address her seizures. This trial-and-error process took several years, but doctors eventually discovered a combination of medications that caused her seizures to stop.
She has now been seizure-free for three years.
Since her first seizure, Kerstens has faced many hurdles. Her teenage years, when she experienced the most seizures, weren’t easy and this was compounded by the fact she was a high-school student at the time, she says.
“You start to live a life of isolation,” Kerstens says. “I was lucky enough that I was still able to find a way to take part in day-to-day activities. I stayed at school, I still participated in sports, but there was a definite shift in terms of who wanted to be around me.”
It wasn’t until she had completed university that Kerstens learned about Epilepsy Durham Region. She reached out to the agency and eventually began volunteering. She credits Dianne McKenzie, the agency’s executive director, for encouraging her to share her story with students at educational events to help raise awareness of epilepsy, which affects an estimated one in every 100 Canadians.
After completing university, it wasn’t easy going to job interviews and disclosing her condition to potential employers — the fear that she would be judged for having the condition was always a cloud hanging over her, Kerstens says.
Kerstens is an advocate for people living with epilepsy through her work at Epilepsy Durham Region and as a team leader with E-Action, an online community that provides information for those wishing to learn more about epilepsy.
“I see (my volunteering experiences) as positives that give me a lot of skills that many others don’t have, so I was more than happy to have that on my resumé,” Kerstens says.
And how does it feel to now work as an epilepsy awareness advocate?
“It’s an excellent feeling,” Kerstens says. “The only way I can describe it is that it feels like I’m doing what I’m meant to be doing.”
Writer: Deron Hamel
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