This blog post was provided by Deirdre Floyd, President of the Canadian Epilepsy Alliance.
My name is Deirdre Floyd, and I have epilepsy.
So what is epilepsy you may ask? Epilepsy is a disorder of the central nervous system that affects the brain and causes recurring and unprovoked seizures, a sudden burst of electrical brain activity that affects how a person acts. Around the world, approximately 1 in 100 people are diagnosed with epilepsy, and 260,000 Canadians live with the condition each and every day.
Surprisingly, living with epilepsy is not only challenging because of the seizures that can occur at any time. Many people living with epilepsy often experience challenges living independently, are victims of social stigma and discrimination, and have difficulty accessing means to help manage their disorder. Speaking from experience, when I was diagnosed with epilepsy at 13 years old, I often felt alone and isolated from my peers. Over the years, I’ve learned to become more comfortable talking about my disorder and hope to help other people living with epilepsy to feel the same.
As President of the Canadian Epilepsy Alliance (CEA), we are a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families, through support services, information, advocacy, and public awareness. The Canadian Epilepsy Alliance works with the International Bureau of Epilepsy and participates in global initiatives representing those living with epilepsy in Canada, while also working to advocate for epilepsy education. And, most importantly, a need to encourage others living with epilepsy to share their own personal stories.
At the Canadian Epilepsy Alliance, one of our greatest achievements happened in 2013 when Parliament passed the Purple Day Act, designating March 26 as a day to focus on epilepsy awareness. Since then, every year on March 26, all twenty-four member agencies of the Canadian Epilepsy Alliance host a variety of events and educational activities to promote epilepsy awareness. Purple Day for Epilepsy is now celebrated in over 70 countries worldwide and across Canada Epilepsy Purple Day Ambassadors across Canada and many activities taking place throughout the month of March.
Join the conversation online this Purple Day by using the hashtag #PurpleDay online to learn more about epilepsy and support epilepsy awareness.