The Canadian Epilepsy Alliance has been formed to address issues of national importance to people living with epilepsy, to share resources and leverage partnerships so that your life with a seizure disorder will improve in the years ahead. We expect that our alliance will emerge as a formidable voice for the epilepsy community, and a leading influence in the promotion of service innovation and excellence in Canada.
On April 28, 2000, representatives from epilepsy organizations from across the country met at the City Hall in Trois Rivieres, Quebec to officially launch the new Canadian Epilepsy Alliance/Alliance canadienne de L’épilepsie. The occasion represented not only the launch of a new organization, but also first steps in the realization of a dream among Canada’s grassroots epilepsy organizations. We believed that working together would make us stronger than we could ever be alone in our efforts to enhance the quality of life for Canadians affected by epilepsy.
As part of the celebration, we launched a Canada-wide survey on what people affected by epilepsy see as their most pressing concerns. The survey results have helped to direct our ongoing efforts, and keep us in touch with the real life challenges of those living with epilepsy. To the best of our knowledge, no similar survey had ever been undertaken in Canada! .
The launch also coincided with the release of the “Out of the Shadows” postcard campaign, our contribution to the Year 2000 Global Campaign Against Epilepsy, declared by the World Health Organization, and supported by the International League Against Epilepsy, and International Bureau for Epilepsy. 55,000 postcards were distributed across Canada.
CEA Conducts Nation-Wide Epilepsy Survey
The Canadian Epilepsy Alliance recently conducted national survey to determine the foremost concerns of people with epilepsy and their families in Canada. We believe that by joining forces and combining efforts, we are better positioned now than ever before to represent your interests and mobilize real change in this nation.
We asked people living with epilepsy: What issues affect you the most? How would you have us advocate on your behalf?
Specifically, people were asked
“How concerned are you about each of the following issues?”
- People with epilepsy can have their driver’s license revoked following a seizure.
- Strobing (i.e. flickering Images) on television and video games can trigger seizures.
- In many movies, books and television shows, people with epilepsy are portrayed as being “crazy” or “evil”.
- Very little research is being done regarding the value of special needs dogs in helping to prevent injury in people with epilepsy.
- Some people with epilepsy can’t afford their medication.
- Pharmacists are not required to inform their customers when substituting brand name drugs with generic equivalents.
- Unemployment (and under employment) among persons with epilepsy is four times the community average.
- “Children and adults with epilepsy often experience barriers to and a lack of support for education”.
- The medical community is not always properly trained about how to inform and educate people about epilepsy.
- Police, teachers, and other public servants are often improperly trained to deal with persons with epilepsy.
- People with epilepsy who divorce are more likely to lose child custody and visitation rights.
- Some people with epilepsy cannot get access to EEG and other diagnostic tests.
- People with epilepsy may find it more difficult to immigrate to Canada.
- Some people with epilepsy find it difficult to get life insurance and health benefits.
- It is illegal to purchase Marijuana for medicinal (i.e. seizure management) purposes.
- Epilepsy continues to be misunderstood and stigmatized by the community at large.
Respondents were also asked ‘Please indicate your top three choices from the above list and why they are of particular concern.” “Are there other issues That you would like addressed? If so, please describe them briefly”.
The results of this survey were tabulated nationally. The results are available in “National Survey Results” – Volume 2, Issue 2 of Epilepsy Matters, our national newsletter. You can read the results online by clicking on the Newsletters link on the left.