Epilepsy Ontario is urging parents of elementary and high-school students living with epilepsy — as well as high-school students who have the condition — to participate in an online survey to help establish the level of support schools in the province are providing children and youths affected by seizure disorders. Aside from providing important information about students with epilepsy, participation in the survey will also send the province a collective message from the families of the estimated 10,000 children and youths in Ontario living with the condition, says Epilepsy Ontario executive director Rozalyn Werner-Arcé.
“This is their opportunity to tell their perspective of how well schools support their students with epilepsy as well as to provide input on strengths and opportunities for improvement,” she says.
Epilepsy Ontario has teamed up with other provincial advocacy organizations to ensure that the voices of families are heard in the surveys. These include Anaphylaxis Canada, the Asthma Society of Canada, the Ontario Lung Association and the Canadian Diabetes Association. The surveys provide a focus on each condition.
Areas examined in the surveys include policies and procedures, staff awareness and resources offered at school to support students.
In April, the Ministry of Health and Long-Term Care announced the province would be undertaking an assessment to review how these medical conditions are handled in schools.
The surveys are the result of the collective efforts of the partnering advocacy organizations.
To date, Werner-Arcé says families are indicating inconsistent levels of support throughout the province.
“Some schools work with families to determine the best way to support children, but that hasn’t been the experience of all Ontario families,” she says. “Our hope is that the survey results will demonstrate the need for legislation to protect children and ensure they are safe at school.”
There is one survey for students in grades nine to 12 and another for parents, and both are available in English and French. The surveys can be completed until Nov. 28. The surveys were developed by the Ontario Physical and Health Education Association (Ophea), in co-operation with the Ontario government.
The surveys can be accessed in the following formats:
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Fourteen people representing Epilepsy Durham Region recently scaled a side of the Grand Canyon, raising more than $50,000 to support the agency’s pediatric management program. However, the greatest success was the epilepsy awareness created at an international level, say those involved with Epic Climb.
“The awareness we were able to build is priceless — (the climb) built such a unity in our community,” says Epilepsy Durham Region executive director Dianne McKenzie.
Participants in the Oct. 7 Epic Climb are seen here posing with portraits of people who inspired them throughout the 4,500-foot trek up a side of the Grand Canyon.
“The community rallied with us. We raised a significant amount of money but for me it was never about the money; it was the opportunity to rally the community, to step forward and support people with epilepsy and learn about epilepsy.”
Epilepsy Durham Region launched a social media campaign, utilizing Facebook and Twitter to raise awareness of Epic Climb and to help people learn about epilepsy and seizure disorders. McKenzie says the effort paid off. The Epic Climb Twitter account has received more than 600 followers; the Facebook page has close to 350 likes.
The team aimed to raise $45,000 Epilepsy Durham Region’s pediatric management program. To date, $51,267 has been raised, with funds still coming.
“The (success) is how we engaged people — even internationally — to learn about epilepsy, and have them say ‘Now I know more about epilepsy than I did before’,” McKenzie says.
While in the U.S., the Epic Climb team met with people from the Epilepsy Foundation of Arizona to share perspectives and ideas about programming which brought an international flavour to the event, McKenzie says.
Chelsea Kerstens was another climber. Kerstens, who is living with epilepsy, says at a personal level, the climb accomplished “a great feat” for her.
“It’s not just what we did in the canyon, it was also watching how the community rallied around (people with epilepsy) leading up to and after the climb — that’s been really, really special.”
Epic Climb saw participants scale a 4,500-foot side of the Grand Canyon on Oct. 7, equivalent to climbing the CN Tower 2 ½ times. The climb took 11 ½ hours
What inspired participants throughout the gruelling climb was thinking about the challenges those living with epilepsy face, McKenzie says. Before the climb, participants posed with photos of people who were inspiring them.
While physically exhausting, the event is something McKenzie and Kerstens say they’ll never forget.
“It was a moment to be captured in one’s lifetime,” McKenzie says.
Writer: Deron Hamel
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A first-of-its-kind online toolkit is now available to provide training and resources to companies and organizations that have employees with epilepsy.
Developed by Epilepsy Toronto, the epilepsy@work toolkit was recently launched. It was developedwith the support of the Government of Ontario, Epilepsy Ontario and CIBC.
The goal of the resource is to help those employing people with epilepsy better understand, address and manage the needs of employees living with a seizure disorder, says Tim Nourse, an employment consultant involved with the project.
“We know that this is unique — there’s nothing out there like this in North America,” Nourse tells Voices of Epilepsy.
“It gives all of the epilepsy organizations in Ontario a resource that they can send employers to, or that they can send people with epilepsy to, and it’s going to dispel a lot of the myths and stigmas associated with epilepsy.”
Employers using the toolkit will find information about strategies they can use to best accommodate employees with a seizure disorder. The toolkit offers resources focused on three primary areas: understanding epilepsy; seizure safety; and first aid, just-in-time resources for human-resources professionals, managers and occupational health and safety specialists.
Once on the website, co-workers, front-line supervisors and HR staff can take a 30-minute course to help them understand the condition and why having an employee with epilepsy is actually good for business.
Employees with epilepsy are encouraged to share the toolkit with their employer. Generally, people living with epilepsy have a greater challenge retaining a job than finding employment, Nourse says. The information garnered through epilepsy@work can be used to curb discrimination and guide employers to appropriate resources, he notes.
“People may choose not to disclose (that they have epilepsy), but when they have that first seizure at work things get a little bit dicey,” Nourse says. “For the person with epilepsy, they may not have a local (epilepsy support agency) that can help them, but they can steer their employer towards this website.”
Epilepsy Toronto is working with other epilepsy support agencies throughout the province to get the word about the resource, Nourse says.
“It’s not meant to replace (epilepsy support agencies); it’s a tool to augment the services that they already provide in communities,” he says.
Writer: Deron Hamel
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On Sept. 11, the results of a first-of-its-kind study examining the impact neurological conditions like epilepsy have on affected people, their families and the greater health-care system, were released. According to the report, more than 3.6 million Canadians are affected by neurological conditions, including 50 per cent of those living in long-term care homes or receiving home care. The study also found the unemployment rate of people with neurological conditions, excluding migraines, to be 12 times higher than that of the general population.
Other key findings from the report include:
– Epilepsy was one of the 14 priority neurological conditions studied – People affected by neurological conditions are twice as likely to suffer from depression – People with these conditions use more health-care services than those living with other chronic conditions – Thirty-five per cent of adults with neurological conditions report experiencing a financial crisis in the past year – The number of Canadians hospitalized with traumatic brain injury is expected to increase 28 per cent – Epilepsy is associated with significant direct (health care) and indirect economic costs – By 2031, the indirect economic costs due to premature death and disability for working-age people with epilepsy is projected to be $2.8 billion – The study identified areas for more research, including the impact of neurological conditions on children – Individuals with different neurological conditions share many of the same impacts, such as memory impairments and thinking/problem-solving difficulties – As a result of this study, the Canadian Chronic Disease Surveillance System has been expanded to track neurological conditions including epilepsy
Voices of Epilepsy recently spoke with Dr. Nathalie Jetté, who was a primary investigator as well as a resource for other researchers who included epilepsy in their projects researchers working on this study:
Voices of Epilepsy: What did you learn about epilepsy and other neurological disorders as a result of having been involved in this study?
Dr. Nathalie Jetté: We gained significant knowledge about the worldwide epidemiology of neurological
Dr. Nathalie Jetté
conditions and have developed a strong foundation — both methodological and collaborative — to guide neuro-epidemiology and health-services research in neurology for years to come. However, I also learned that although there is a lot of excellent neurological research being carried out in Canada, our knowledge of the epidemiology of these conditions and its true impact is still limited, particularly in Canada. In general, most of the data we have to help us understand how many Canadians are affected and how they are affected by these conditions is based on self-report or administrative databases that can be very helpful but lack the detailed clinical information that can truly help us understand the impact of these conditions on the patients, their families and society. There are very few longitudinal cohort studies where patients are followed over time which have been carried out in Canada, and certainly none for those with epilepsy.
The study confirmed that those with epilepsy and other neurological conditions are greatly affected not only by their disease specific symptoms, but also by many other factors including the additional impact of co-existing conditions — for example, depression — and psychosocial issues (such as) stigma, unemployment, etc.
VoE: What were the main findings from your work related to epilepsy? What do you feel is the most significant finding for people living with epilepsy and their families from your research?
NJ: I think the most significant finding from our research is that it is possible to develop a national surveillance program for epilepsy in Canada using existing data sources to better understand the scope of this condition and how much resources are used to care for those with epilepsy. This will help us guide future health-care provision in Canada for persons with epilepsy. This is something that we have had the opportunity to work on with the Public Health Agency of Canada’s Canadian Chronic Disease Surveillance System Neurological Condition Committee. They will soon be launching a surveillance program for epilepsy. This program will help us fill many knowledge gaps about the epidemiology of epilepsy in Canada.
VoE: What future outcomes are you most excited about?
NJ: I think our project evaluator, Dr. Ardene Vollman, addressed this best in the evaluation report she prepared about our study: “The knowledge gained from this project (methods, tools, definitions, terminology, and recommendations) has the potential to guide and co-ordinate neuro-epidemiology for years to come as our project evaluator commented on. The impact of systematic reviews (and the findings from other projects we were involved in) on knowledge translation into clinical practice presents substantial opportunity for improvements in patient care. The impact on student development and training is potentially considerable. There is extensive potential that the networks developed will flourish over time to become a world- renowned research alliance that contributes significantly to the international neurological health scene, both epidemiologically and clinically.”
VoE:People who live with neurological conditions, as well as patient advocacy groups, played an important role in this study from beginning stages to the drafting of the final report. What were the benefits of the collaboration between patients and their families, patient groups, researchers and government?
NJ: The benefits included making sure that the study was relevant to the key stakeholders, particularly patients and their families and patient groups. The study could not have happened without the support of these patients, families and patient advocacy groups who were the driving force behind this whole initiative, largely through their efforts and through the creation of Neurological Health Charities Canada (NHCC). Government was the funding arm of the study and the incredible leadership of the Public Health Agency of Canada and the NHCC throughout this major initiative was instrumental to its success. Of course, this could not have happened without all the researchers who led the research activities. Overall, great research collaborations have been created that I suspect will last a very long time and play a strong role in improving care for those with epilepsy and other neurological conditions nationally and abroad.
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