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Be Heard Campaign
By Nicole Nelson, Epilepsy Toronto
Twenty-four youth with epilepsy from across the province gathered in Toronto for a first-of-its-kind youth conference for a very important reason—to be heard. During this four day conference, these young individuals told their personal stories of how epilepsy impacted their lives. They gave particular attention to the stigma of epilepsy and the misconceptions that cause the most negative impact. They were asked the very important question, "If you could send out a message to thousands of your peers about epilepsy, what would that be?"
While the group agreed that youth need to know proper first-aid and more about seizures in general, this wasn't the most important message for them. Time and time again during the brain storming sessions and focus groups the youth expressed frustration of being "put in a box" or "labeled" because they had epilepsy. The biggest challenge was often caused by others putting limitations on their abilities or assuming they weren't fully independent because they had seizures. This was, it would appear, the record they all wanted to set straight. Going forward Epilepsy agencies across Ontario will use their feedback to create an effective provincial educational campaign and will continue to consult them throughout this exciting process.
There was in fact more to this conference than hard work. Perhaps the most heart-warming aspect was the special friendships that formed over the four days. Some participants had never met another person their age with epilepsy and many had no friends who lived with seizures—so meeting others who truly understood their challenges was an experience cherished by all. Some participants said it was the most amazing weekend of their lives and didn't want it to end. Although all good things do come to an end, we take great comfort in knowing that before they embarked on their train, plane, or bus to go wherever they call home, they left with e-mails and phone numbers in hand and even started texting one another before they actually parted ways. The friendships formed were meaningful and had a positive impact and that was the most special part of all.
We thank all of the youth who came out, spoke openly and honestly about difficult issues in order to make the community a better place for people with epilepsy. We appreciate their contribution and are inspired by them.
A special thanks to the Ontario Trillium Foundation, Mary Secco of Epilepsy Support Services, London, and all the epilepsy agencies for their leadership in the Be Heard campaign.
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