A new survey available on the Epilepsy Ontario website is aiming to discover what the epilepsy community wants to talk about and to seek out people’s experiences of living with the neurological disorder and the key issues important to them.

Epilepsy Ontario executive director Rozalyn Werner-Arcé says the organization is hoping the survey will provide feedback that will help drive the Voices of Epilepsynews program in a direction that will result in more people-centred stories that get to the heart of issues.

People’s experience with employment, human rights and medication issues — these are some of the story possibilities Werner-Arcé says should be highlighted more often through the Voices of Epilepsy.

“We want to ensure that the Voices of Epilepsy truly reflects the voices of our readership.,” she explains.

“We want the content to be of interest to our readership as well as reporting on issues that are relevant to the epilepsy community.”

Storytelling is an influential tool when Epilepsy Ontario meets with government officials to discuss the concerns and needs of the epilepsy community, she adds.

“There is nothing more powerful than storytelling — we’ve seen that when we are meeting with government,” she says.

“Personal stories help others living with epilepsy realize they are not alone, illustrate the variety of different experiences — both good and bad — that people with epilepsy may have, and can inspire individuals and the whole community.”

While stories told from the perspective of those living with seizure disorders and their families isn’t new to the Voices of Epilepsy, it’s something Werner-Arcé says the organization wants to see happen more regularly.

Examples of stories published on the website illustrating the people-centred approach to stories the organization is hoping to see more of include:

— A mother’s struggle to obtain a new vagus nerve stimulator for her daughter
— An Ottawa police officer’s mission to educate law-enforcement officials about seizure disorders
— A young woman’s account of why the province needs an epilepsy strategy

You can access the survey by clicking here.

“I really urge people to take a few minutes to fill this out,” says Werner-Arcé.

“The Voices of Epilepsy is really for our stakeholders, our epilepsy community, but it is also a tool to educate the public about the condition, so we really want to maximize this opportunity.”

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. You can also leave a comment below.
 
Writer: Deron Hamel