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2013 Epilepsy Action Day was ‘amazing’

September 25, 2013

During the 2012 Epilepsy Action Day at Queen’s Park, Ontario’s epilepsy support agencies, along with people living with seizure disorders and their families, asked MPPs for a provincial epilepsy strategy to address their needs. At the 2013 Action Day on Sept. 24, the same people were thanking government officials for launching the Epilepsy Strategy Implementation Task Force in spring.

Left to right, Epilepsy Ontario executive director Rozalyn Werner-Arcé, Health and Long-Term Care Minister Deb Matthews, Opposition health critic Christine Elliot and Epilepsy Ontario treasurer Gino Piazza are seen here during Epilepsy Action Day at Queen’s Park.

This demonstrates what’s possible through engagement with government decision-makers, and it was one of the many ingredients that made the event an “amazing day,” says Epilepsy Ontario executive director Rozalyn Werner-Arcé.

“It’s quite amazing when you think that one year ago we were at Queen’s Park and we were asking for a strategy and here we are one year later, thanking them for the strategy,” she says.

During the many meetings, teams of people representing the epilepsy community held with the province’s decision-makers, this year’s Epilepsy Action Day focused on discussing the social burden of epilepsy as well as what needs to be done to improve epilepsy awareness through education.

Ensuring access to all treatments and finding a solution to the serious problem of drug shortages were among other major issues discussed with political leaders.

What was especially noteworthy about the day was the fact that the engagement level was deeper than ever, Werner-Arcé says.

MPPs and other leaders were interested in the discussions and asked “really good” questions, provided valuable feedback and, perhaps most importantly, offered ways they could help, she adds.

For example, some MPPs offered to introduce epilepsy agencies to important leaders, while others offered to spearhead initiatives or to provide assistance in decision-making processes.

“Epilepsy Action Day at Queen’s Park has come a long way in the last four years,” Werner-Arcé says. “One of the things we heard (from MPPs) was, ‘Keep doing what you’re doing.’ ”

Looking ahead, Werner-Arcé says increased recognition of the importance of community-based supports and services for people with epilepsy and their families, realized through funding of patient education and self-management programs offered by epilepsy support agencies, would be the best possible long-term outcome from this year’s Epilepsy Action Day at Queen’s Park.

The day concluded with a reception attended by MPPs, government officials and stakeholders. Health and Long-Term Care Minister Deb Matthews, Progressive Conservative health critic Christine Elliott and NDP deputy house leader Cindy Forster spoke at the event.

Writer: Deron Hamel

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Epilepsy and employment: what you should know

September 18, 2013

Tim Nourse recounts the story of an acquaintance living with a seizure disorder who is a highly-valued employee of a nationwide corporation. Despite the fact this individual’s seizures are fully under control and her employer has an excellent track record of accommodating people with all disabilities, she has never disclosed her condition.

Nourse, an employment consultant, says this story is typical of many people living with a seizure disorder. People with epilepsy face employment barriers, however, the challenge is typically not finding work, it’s maintaining a job.

“A lot of people, because they have had bad experiences in the past with epilepsy in the workplace or with disclosure, choose not to disclose,” Nourse tells Voices of Epilepsy. “Usually they’re OK, but when they have that first seizure, often employers find ways to let them go.”

Like any disability, epilepsy is covered by provincial and federal rights legislation. It’s illegal to discriminate against people with a seizure disorder on the basis of their disability. But it happens anyway, says Nourse.

This, he says, is largely because epilepsy is an “invisible disability.”

“For somebody who has, let’s say, a spinal-cord injury, the employer knows what to expect; here’s somebody that needs a modified desk or a power-door opener,” Nourse says. “With epilepsy, it’s so unpredictable and there is so much myth and stigma associated with it that, with legislation or not, (discrimination happens).”

People with epilepsy who have been discriminated against because of their disability sometimes do stand up for their rights but often they don’t. And there’s a reason for this. Stress is a major trigger for epilepsy, and contesting a wrongful dismissal claim can be an extremely stressful process, hence, many people prefer to simply move on and find a new job.

Fortunately, help is available for people through their local epilepsy resource centre, Nourse says.

Epilepsy Toronto, for instance has employment specialists. All epilepsy agencies can redirect people looking for help with employment issues.

Having someone on their side to help file a claim can alleviate a lot of the stress for people with a seizure disorder that comes with the process, he adds.

For more information about what resources are available for people with seizure disorders, contact Epilepsy Ontario at 905-474-9696, or toll-free at 1-800-463-1119.

— More to come

Writer: Deron Hamel

Project creating consistent epilepsy resources, information across Ont.

September 11, 2013

People with epilepsy living in all regions of the province can expect to have increased access to consistent educational resources and supports in the next three years, thanks to a project funded by the Ontario Trillium Foundation.

Epilepsy Ontario has received funding for the From Isolation to Inclusion project, which aims to enhance the capacity of community epilepsy agencies across the province to ensure people with seizure disorders have adequate access to resources and information no matter where they live.

The Trillium Foundation is providing $280,800 over three years to alleviate the long-standing challenge Ontarians with epilepsy face when they live in more remote regions — northern Ontario, for instance — and need to access community and educational resources, says project manager Nikki Porter.

The project’s first phase is dedicated to identifying the best education and support programs available to people with epilepsy across the province and make them available to all people with epilepsy and their families — wherever they live.

Phase 2 is focused on outreach, says Porter.

“We want to reach more people who have epilepsy and their families and more community stakeholders to connect them to community agencies,” she says.

“That would help people with epilepsy, especially if they’re newly diagnosed or they don’t know much about their condition. (This will) give them a better handle on what’s going on — and hopefully give them the tools to be better self-advocates.”

Key points of the project include:

– Bringing together epilepsy agencies to share best practices and resources that have largely only been available to people in certain communities
– Adapt programs and resources so they are applicable to local contexts
– Identify gaps in programs and materials
– Update current tools where needed
– Develop innovative new education, support and outreach tools to fill identified gaps and drive the mission of epilepsy agencies forward

In short, the Trillium Foundation’s funding is helping Epilepsy Ontario collaborate with epilepsy agencies to create a project that will help eliminate barriers faced by many people living with seizure disorders.

As part of her role, which was created for the program, Porter is forming a working group made up of representatives from several epilepsy agencies across Ontario as well as epilepsy information specialist Suzanne Nurse to co-ordinate efforts.

A web designer, graphic designer and market research team will be utilized to help see the project through to completion.

Looking to the long-term, Porter says the best possible result from elimination of barriers would be for more people with epilepsy to have access to social, employment and educational opportunities.

“Full participation in your community is the best possible outcome — to be a fully participating member of society, to be able to go through life with the tools to break down any barriers you come across and to come across fewer barriers,” she says.

Writer: Deron Hamel

Challenges with epilepsy empowering student to reach goals

September 4, 2013

Growing up with epilepsy, Tori Gleason faced many challenges. Now she’s hoping to turn the negative experiences that came with living with a seizure disorder into something she can use to help others.

The 18-year-old is enrolled in the child and youth worker program at St. Lawrence College in Brockville, Ont. She’s planning to use her education to pursue a career helping young offenders. Her passion for working in this field stems from her ability to better understand others because of her own struggles.

Given that some youths turn to criminal activity as a result of the hardships they face, Gleason says in a youth-worker role she will be able to communicate to young offenders that she also had struggles growing up — her struggle was with epilepsy — and that she’s living proof those struggles can be overcome.

“I have been through a lot and will be able to tell them, ‘I hear you. I know; I was there, too. I had my own struggles,’ ” she says.

“Hopefully, I am able to take all these challenges I have had so far and use them in a positive and insightful manner for others. Epilepsy is something I have. I am slowly learning to live with it but not let it define me.”

Diagnosed with epilepsy at 13, Gleason, a Smith Falls, Ont. native, has spent much of the past five years in and out of hospital. She says her seizure disorder caused her to miss a lot of school and to be ostracized by her peers. Despite the impact epilepsy had on Gleason’s academic life — her health caused her to miss so much school she had to repeat Grade 10 — she has persevered.

Fortunately, Gleason’s epilepsy has been treatable and she has gone from having as many as seven seizures per day to none since May.

She adds that she has come a “long way.” Gleason has completed Grade 12 and the avid hockey fan is once again playing her beloved sport.

In June, Gleason won OBCL’s President’s Award of Distinction. She was presented with the award June 4 at a ceremony that saw five other students recognized with scholarships.

OBCL has been supporting students with epilepsy through the scholarship awards since 2006. Every year, up to 10 Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.

Writer: Deron Hamel