Keri-Rose Tiessen’s struggled with a rare type of seizure – once the SIU diagnosed and treated her, she became a nurse in neuroscience
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In return, she completed her registered nursing studies at BCIT and has become a neurological nurse with the unit — located in Vancouver General Hospital’s Jimmy Pattison Pavilion — tending to patients wondering, as she had, whether they might need epilepsy surgery and other unknowns that a subset of epilepsy patients face.
She’s also become a spokeswoman for others with epilepsy, recently addressing the Canadian Association for Neurosciences Nurses and crusading against the stigma faced by those with the chronic disease of the brain that causes seizures.
About 40,000 British Columbians have epilepsy, according to Vancouver Coastal Health.
“There is a stigma around epilepsy,” said Tiessen, who for a long time hid her epilepsy. “Unfortunately, culturally, some people deem that, you know, maybe you’re possessed.
“And there’s just the regular stigma that we can’t do anything, we can’t function, that we’re disabled people who can’t contribute to society and do the things we want.
“For a number of years I didn’t tell anyone that I had this, I’m kind of going in the opposite direction now.”
One Diagnosis episode in summer dealt with the rare subset of epilepsy Tiessen has and she wanted to offer viewers of the show an insight based on her personal experiences with seizures.
“I basically wrote the doctor and said, ‘Hey, I think I can help this guy. I have the same thing as him.’
“And then it kind of blew up. So yeah, I’ve only started telling people, because … I didn’t realize it was OK, and it is OK to have it.”
Epilepsy is another word for a seizure disorder, said Dr. Chantelle Hrazdil, a neurologist and epileptologist at Vancouver General Hospital and a clinical assistant professor of medicine at UBC.
While perhaps one in 100 or so of people will have epilepsy in their lifetime, Tiessen’s type of epilepsy is a microscopic subset of that group.
“And what makes the type of seizure that Keri-Rose has unique is the area of the brain that her seizure is coming from leads to a communication between the brain and the heart,” Hrazdil said.
In effect, the brain tells the heart to slow down or stop completely. Tiessen has flatlined on numerous occasions.
She isn’t sure how long she’d been having seizures and she perceived them as panic attacks. But in 2006, at age 21, she was teaching swimming lessons and the lifeguard on deck noticed Tiessen was having trouble speaking.
“She said, ‘What just happened?’ I said, Oh, it’s just a panic attack. It’s no big deal. And she said, ‘No, that was something else. You need to get that looked at.’
“I didn’t really think much of it, but said OK, I’ll mention it to my doctor.”
In 2017, one seizure was almost fatal.
“I lost all consciousness, melted off my chair and fell face-first onto the ground,” she said. “I had a seizure, but my heart also stopped. That’s when I went to the SIU.
“Over the course of four years, the team caught it, diagnosed me, and gave me medication as well as a pacemaker.”
Today, at 39, she’s able to play hockey, swim in open water, hike and run, drive a vehicle — all the things she loves and once was told she couldn’t do anymore.
Her pacemaker isn’t a magic wand, she cautioned. It and her medication are like a bandage, preventing her from having heart-stopping seizures, but she still has smaller, less severe seizures on occasion.
Being a nurse had always been her dream job. The team at VGH and the epilepsy clinic worked her medical schedule around her school work, as well as her days-long stays in the unit.
So to be able to help calm some patients whose shoes she’s been in, it’s not exactly paying it forward, it’s more like things have come full circle.
“I’m not here without the SIU, you have no idea,” Tiessen said. “I wouldn’t be doing what I’m doing without them.”