Epilepsy information specialist Suzanne Nurse says attending a recent U.S. conference was an opportunity to share a Canadian survey’s findings with colleagues across North America, as well as a chance to learn about new epilepsy research developments that will help her better serve Epilepsy Ontario’s stakeholders.
Nurse attended the American Epilepsy Society’s (AES) 2012 meeting, held in San Diego Nov. 30 to Dec. 4. to engage health professionals specializing in epilepsy. Nurse represented the Canadian Epilepsy Alliance, a national network of organizations focused on promoting independence and quality of life for people with epilepsy and their families.
At the meeting, Nurse also learned about the latest epilepsy research from Canadian and American colleagues and researchers from other countries such as Australia.
The survey, entitled The Impact of Epilepsy on Canadians, was the first of its kind to examine epilepsy’s impact on Canadians in both official languages. The survey identified three of the Canadian epilepsy community’s major needs:
– Improved public awareness and education
– Timely and regular access to specialized care and support
– Access to new and better treatments
The poster also highlighted the greatest challenges the 671 respondents cited:
– Lack of independence
– Negative impacts on social life
– Discrimination
– Maintaining employment
– Maintaining relationships
Information from the survey was presented on a large poster board the Canadian Epilepsy Alliance representatives brought with them to showcase at the event.
“The findings help to back up many other research studies that show epilepsy can have a significant impact on people’s lives and provide Canadian data about living with epilepsy,” explains Nurse, when asked of the importance of sharing the findings.
“There are also a large number of Canadian clinicians and researchers who attended this meeting, and by presenting the poster at the AES, even though it’s an American meeting, it does help to make the Canadian community aware of the research that’s going on in our country.”
At the meeting, Nurse also learned about the latest epilepsy research from American colleagues.
Some of the professional development sessions she attended focused on new developments in epilepsy medication safety during pregnancy and presentations on insights on the relationship between genetics and epilepsy.
“By attending this meeting, you really get a good sense of the things that are happening, and you get to hear from the leaders in the field who are conducting this research,” says Nurse. “Canadian epilepsy researchers are playing a key role on the international scene.”
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Writer: Deron Hamel
