Anniversaries and birthdays are important times. It’s when we celebrate
with family and friends and assess the progress made on our journey.
During Epilepsy Awareness month, Epilepsy Canada is marking its 50th anniversary. Since 1966, we have served as an advocate and conduit for the funding of epilepsy research at Canadian hospitals and universities.
Because of your support, we’ve been able to fund many research initiatives
- ten in the last 4 years alone. We’ve made real progress in the fight to control
or defeat seizures for the over 300,000 Canadians living with epilepsy.
But there is still much to do.
I often speak about epilepsy with children at schools and executives at major corporations. No matter whom I meet with, they’re surprised to learn that epilepsy effects 1-in-100 people worldwide. They ask, “If epilepsy is so common, why don’t I hear about it? And why is more not being done?” These are important questions, so I would like to answer them for you.
Why don’t I here more about epilepsy?
Once diagnosed, patients face immense social challenges as well as medical ones.
If an adult, they will immediately lose their driver’s license which can effect their job. A young woman looking forward to becoming pregnant, must put her plan on hold, perhaps permanently. Children face being ostracized by classmates and prohibited from participating in sports. We know of cases in which schools or employers, acting out of fear or misinformation, attempt to restrict patients’ legal access to their buildings. So, its not surprising that those living with epilepsy are hesitant to tell anyone beyond their family circle.
Thanks to the progress made in drug therapy in the last 50 years, approximately 70% of are now able to mitigate or manage their seizures through medication. They’re able to resume “normal” lives, though the threat of the next seizure lingers. More and more of these courageous people are sharing their stories with us and allowing us to post them at epilepsy.ca. For the remaining 30%, epilepsy remains a debilitating disorder and its consequences will last their lifetime.
Today, there is no cure or universally effective treatment option. So it’s not hard to understand why epilepsy patients are twice as likely to also suffer from the biting pain of depression. And, approximately 1% will die prematurely of SUDEP - Sudden Unexplained Death related to Epilepsy.
Why is more not being done?
As you are no doubt aware, there are many types of seizures, partial and generalized. These two major groups can be ordered into many sub-categories, each with specific characteristics. It’s a complex problem! That is the challenge to finding a cure for all seizures. The neurology community is dedicated and persistent but it needs time and funding.
A gift of $1 for each of the 50 years that we have pursued a cure will make a huge impact. More questions will be answered, therapeutic advancements will be made and more of those with epilepsy will achieve their full potential. Please help.