cassidy megan found out she had epilepsy when she was a little girl. at the time, she didn’t know much about it, and she didn’t know anyone else with it.
she hid the diagnosis from friends for a few years, but eventually, after she heard a presentation on epilepsy at her elementary school, she began to share her story.
she’s not alone. epilepsy is a neurological condition that affects close to 50 million people around the world. about 30 per cent of people with epilepsy experience uncontrolled seizures despite treatment, something that may impact their friendships, careers, education, and quality of life.
“epilepsy is considered a highly treatable disease, yet around one-third of canadians with epilepsy – about 100,000 people – remain unable to achieve seizure control through available means,” says canadian epilepsy alliance president laura dickson. “this represents a substantial need and one that can be met with better access to therapies and supports.”
“treatment options and therapy bring hope for those with epilepsy and in particular those with uncontrolled epilepsy – hope for freedom from seizures and hope for achieving future goals and dreams felt to be limited by seizures that are unpredictable,” dickson says.
“in this case, hope also brings with it a sense of empowerment and opportunity to rise above a disease that is felt to be limiting, controlling and without end.” uncontrolled seizures, in particular, really limit a person’s sense of freedom, according to dickson.
“having to worry about being alone in a public place and having a seizure can lead to stress and even decisions to further isolate oneself to avoid having a seizure in a place where people do not know how to react or how to help,” she says. “it can limit or negatively affect a person’s ability to maintain employment and therefore a person’s sense of financial security.”
uncontrolled seizures also affect relationships with partners and spouses who are thrust into the role of caregivers. “all of this can impact a person’s sense of mental and physical well-being, with higher reported rates of anxiety and depression among those with uncontrolled epilepsy,” dickson says.
epilepsy has affected megan’s mental health, and it has made many typical life markers difficult, like dating, driving, and working.
“you’re missing those milestones,” says megan. “it’s cancelling plans with your friends last-minute because you’re sore and tired after a seizure. or it’s when your friends know you can’t do certain things or forget what you can do.”
but by sharing her story, megan, now 24 years old, hopes that more people realize that epilepsy is only one aspect of a person’s life. after high school, she studied applied media and communication arts. she loves spending time with her friends, family, and her pets, and she likes to swim and hike, too.
megan is also the founder of purple day (purpleday.org). celebrated on mar. 26 each year around the world, it is a day that focuses on raising awareness about what it means to have epilepsy.
she recently received the 2023 ambassador for epilepsy award and the social accomplishment award at the international epilepsy congress for her contribution toward advancing the well-being and quality of life of people with epilepsy.
and she and dickson both dream of a day when epilepsy research has the funding that other medical conditions receive.
“epilepsy does not get the attention it deserves,” dickson says. “government attention and funding tend to flow to patient groups for other diseases for which there are larger budgets for advertising and awareness campaigns.
“access to therapy for everyone should be within reach, and this means that for those who need it, our health-care system should be able to provide it.”
better funding, megan says, would also help with education, awarenes, and mental health resources for people with epilepsy as well as their families and caregivers. and it could go toward innovative new therapies, too.
“more funding would help find a cure, and if not a cure, better ways to control the seizures,” megan says. “there is always a need for more funding.”
megan dreams of a day when uncontrolled epilepsy is a thing of the past — not just for her, but for everyone. “no matter where you are in the world, we face the same stigma, discriminations and challenges,” says megan.
“but we can go to college and have families and find good jobs. we can lead normal lives just like everyone else.”
to learn more and find out how you can get involved, contact the canadian epilepsy alliance at 1-866-epilepsy or go to canadianepilepsyalliance.org.
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