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

Whitney Goulstone spent Christmas with her children in 2010. Sure, she had a shaved head pierced by stitches, but she was there with her husband, son and daughter. That’s what mattered. It sounds simple, but not for Goulstone. For the first time in recent memory she didn’t have to worry about falling over or dropping her children.

“I was able to be here sitting on the couch with my daughter and my son while they opened their presents,” Goulstone said. “It meant so much to me.”

Goulstone has epilepsy, but she’s been seizure-free for over two years after having brain surgery. It’s an option many with epilepsy don’t even know exists. With her second chance at life, Goulstone wants to change that.

“What we’re working for now through Whitney’s Wish for a Seizure Free Future at the hospital is to raise epilepsy awareness, integrate the epilepsy program and at least double the beds in the epilepsy monitoring unit,” Goulstone said.

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When Goulstone was first diagnosed, doctors told her she wasn’t a candidate for surgery. Dr. Taufik Valiante, a neurosurgeon at the Krembil Neuroscience Centre’s Epilepsy Monitoring Unit, didn’t believe that was true. He dug deeper, ran more tests and confirmed that yes, Goulstone would benefit from a surgical procedure.

That’s why she’s decided to promote the work being done at the epilepsy unit.

“The most important thing is for people to know that the surgery’s available and have more access to it,” Goulstone said. “If I can help one person get the access to what I’ve had, give them that one shred of quality of life back. Then I’ve done as much as I can.”

Given what she’s been through, she was lucky. Epilepsy affects about 300,000 Canadians and roughly a quarter of them, like Goulstone, do not respond to medication. Dr. Danielle Andrade, director of genetics of epilepsy program at the Krembil Neuroscience Centre, calls this drug-resistant epilepsy.

“We have more than 20 medications that we can use,” Andrade said. “But if the person fails the first two medications, if they were the right medication for the right type of seizure, and the person didn’t respond then the chances of becoming seizure-free with medication only are very small.”

Many patients could benefit from surgery. But a study by the Ontario Health Technology Advisory Committee shows that of the 10,000 Ontarians who could benefit from surgery, only two per cent actually undergo the procedure.

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“The epilepsy monitoring unit is really a very important resource in the correct diagnosis and management of epilepsy, but it remains a bottleneck,” Valiante said. “We have five beds here at the Toronto Western Hospital, which means that we can really only get about 135 people through that unit a year. Ultimately we’ll be able to identify about 50 people with the type of epilepsy that they go on to have epilepsy surgery.”

Donations to Whitney’s Wish for a Seizure Free Future go towards releasing that bottleneck and giving those with epilepsy the tools they need to make an informed decision about their future.

“Typically, people feel, you know what, you’re just going to live with your epilepsy and you’re never going to get rid of it,” Valiante said. “We want people, not to believe that it’s a panacea, that it’s going to fix everything, that it’s for everybody, but that it’s an important option for people who have epilepsy.”
Part I: Inside Epilepsy

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

Part V: Inside Epilepsy: Answering a call to action