Saturday, March 14, 2009

Epilepsy Awareness Month

When families discover Epilepsy Durham Region (EDR) for the first time, the reaction is always the same -- relief.

"You can see the weight lifted when they realize they're not alone," said the agency's executive director, Dianne McKenzie.

Unlike cancer or heart disease, which have high profiles in the community, epilepsy is still largely misunderstood and as a result, newly-diagnosed people and their loved ones often feel isolated and have dozens of questions ranging from "will I lose my driver's license?" to "can my boss fire me for having a seizure?"

Fittingly, this year's theme for Epilepsy Awareness Month in March is "You're Not Alone."

In addition to raising awareness about epilepsy and reminding Durham residents that there is support available, EDR staff will be using the month of March to raise much-needed funds.

It costs about $180,000 a year to run the EDR office, with no government funding or cash flow from sources like the United Way. The agency has just one full-time staff person and relies on contract employees and volunteers to keep things going.

Every year, the number of people who need counselling, referrals or education programs increases -- last year the need for EDR services jumped a staggering 97 per cent.

To help keep up, EDR is challenging the 36,000 people in Durham who have epilepsy or are touched by the disorder to each donate $5. If everyone did, it would be enough to keep things running for another year.

"I am optimistic about the support and commitment in our community, but for some reason, it's just harder to get help for epilepsy than it is for other causes," Ms. McKenzie said. "This is something that anyone, at any time could develop and we need to make sure there are services here in our community."

An estimated one in 100 people have epilepsy and one in 10 will have at least one seizure at some point in their lifetime. It is not a disease, but rather a general term for more than 2,000 types of seizure disorders, that occur as the result of brief changes in brain cell activity.

EDR offers an array of services including a parents' forum, resource library, Changing the Face of Epilepsy free lecture series and coaching for children, parents and families. For more information, visit


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