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Headline: Emerging surgery program a 'big deal' for epilepsy patientsFeature
Emerging surgery
program a
'big deal' for
epilepsy patients
By Gerald Flood Summer 2017
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There was an advertisement on the side of a Winnipeg Transit bus for one month earlier this year to promote Purple Day on March 26 and raise awareness about epilepsy. You might not have seen it - there was only the one sign.

"A seizure will strike 1 in 10 Manitobans in their lifetimes," it declared in black script on a purple background.

It was an effective message, drawing attention to the fact that seizures are common in any population. What's less common are epilepsy patients - people who cross a threshold when they have a second seizure similar to their first, then another, and so on, usually with increasing frequency and intensity.

Good point made, it was relatively small as advertising campaigns go. Or so it seemed until it was explained that this was the biggest public advertising campaign mounted for the Epilepsy and Seizure Association of Manitoba (ESAM) in memory.

An ad raising awareness about epilepsy appeared on a Winnipeg transit bus for one month in march. The campaign was made possible through the Winnipeg Transit Community Relations Bus program.

More importantly, the ad's appearance symbolically heralded a bigger development: epilepsy is coming out of the shadows of stigma in Manitoba, driven by slow but accelerating advances in public awareness and a game-changing epilepsy neurosurgery program being launched at Health Sciences Centre Winnipeg.

"Maybe things are coming together at this time," says Chris Kullman, an ESAM member and the designer of the billboard. "Maybe it's fate."

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It has been 20 years since the World Health Organization launched a global campaign against epilepsy called Out of the Shadows. It aimed to raise awareness of epilepsy and to encourage funding for treatment and research. How successful that campaign has been globally - or locally - is unclear.

Anecdotally, however, it appears certain that it has been far less successful than other awareness campaigns, such as those for breast and prostate cancers, the incidences of which are comparable with epilepsy, according to the Canadian League Against Epilepsy.

In Manitoba, for example, CancerCare Manitoba Foundation's annual Guardian Angel Gala alone raises more than $400,000 for breast and gynecological cancer programs and research.

ESAM, meanwhile, raised about $45,000 last fiscal year from all activities, including donations, a poker derby, golf tournament and such third-party events as a variety night held in Morden.

Such comparisons, of course, are not judgments of the campaigns or organizations. They merely illustrate that, comparatively, epilepsy remains largely out of sight and out of mind in Manitoba.

Adam Humphreys, an ESAM board member and fundraiser, says a recent experience was instructive.

Humphreys and his wife, Tammy, an epilepsy patient, were grocery shopping when a store employee had a seizure right in front of them.

"Everyone was panicking," he says. "But we thought, 'Hey, this is just something that happens.'

"Tammy calmed the person down, and calmed all the other people down, too."

Humphreys thinks that the panic of other shoppers is a reflection of a general lack of understanding of epilepsy that can be traced, in part, to the nature of the disease.

Surveys, for example, find a persistent ignorance about epilepsy, with significant numbers of people wrongly believing that they should fear epilepsy patients, that epilepsy is contagious or that all seizures are stereotypical tonic-clonic seizures (formerly called grand mal).

The flip-side of that, however, is that people who experience frequent seizures must be careful not to put themselves in circumstances where they could injure themselves - falling in traffic, for example, or losing consciousness in the bathtub. As a result, some of them tend to lead relatively isolated lives.

"It isn't a physical hell until it is," Humphreys explains. "One minute, it's not there, the next minute, it is. It's like it's this hidden disease most of the time. Unless you're touched by it, you never think about it."

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Manitobans, however, are thinking about epilepsy more today than they were a year ago when Dr. Demitre Serletis was recruited from Little Rock, Arkansas, to start up Manitoba's first comprehensive pediatric epilepsy program at Health Sciences Centre Winnipeg's Children's Hospital and adult epilepsy program at HSC.

The most compelling aspect of the program is that it will offer sophisticated epilepsy surgery as a treatment option to Manitobans for the first time.

But more important is that in order to assess and prepare candidates for surgery - which has a success rate as high as 60 to 85 per cent in the best of cases - all aspects of epilepsy treatment must be co-ordinated into a seamless program for the first time.

Sara Bettess, Executive Director of ESAM, says the creation of a surgery program is an important development for the estimated 15,000 epilepsy patients in Manitoba, especially those who, until now, were put on waiting lists to go elsewhere.

But, she notes, surgical candidates are relatively few compared to patients on medications.

A surgery program will be a "big deal" for surgical candidates, but for most patients the bigger deal is the hope for a comprehensive program like those in larger provinces like Ontario and Quebec.

"A comprehensive programs that pulls everything together . . . that's our dream," she says.

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The program underway in Winnipeg is in line with developments across North America, Serletis explains.

Over the past 20 years, research has found that more attention should be focused on surgery as a means of making patients "seizure-free." That research, in turn, is being supported by the growing use and development of technologies like invasive EEG monitoring that can pinpoint in patients' brains the "focus" of electrical activity that causes seizures.

Successful surgeries, with sometimes seemingly miraculous outcomes, are drawing more attention to the often lonely plight of epilepsy patients, he says.

His experience in Arkansas, where he created its first program much like the one he expects to create here, is instructive.

He says that when he first arrived, there wasn't even a formal epilepsy association in the state. He had to create it, and quickly found willing volunteers to take over the program. This led to large-scale fundraising and information campaigns, which became the norm.

"I expect it will occur here," he says.

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Serletis's expectation was quickly proven correct.

Last month, philanthropists Lilibeth and Michael Schlater presented a cheque for $2 million to the Children's Hospital Foundation to create a pediatric epilepsy and pediatric neurosurgery program at Children's Hospital. The event drew wall-to-wall media coverage.

The Schlaters' gift will address one of the main weaknesses in epilepsy treatment in Manitoba - the absence of a pediatric epilepsy monitoring unit where children's seizures can be monitored and assessed for potential surgery.

Serletis told the media that many of the resources needed to create a comprehensive epilepsy program were already here and are being marshalled toward a "build" that is expected to take years to complete.

But he added, the "generosity of the Schlaters has helped make that happen in a much quicker time frame than we anticipated."

Gerald Flood is a Winnipeg writer.

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