Thanks to the Herculian effort of Quesnel city staff, the footbridge over the Fraser River will be lit in purple in honour of Purple Day for Epilepsy, March 26.
With 65 million people world-wide living with epilepsy, it stands to reason someone you know may be hiding their condition, fearful of how others may react.
Statistically, at least one in 10 people will have one seizure in their lifetime.
For nine-year-old Cassidy Megan, it wasn’t until a presentation on epilepsy in her Nova Scotia classroom that she had the courage to share with her classmates that she lives with epilepsy.
With curiosity, not the ridicule she expected, her classmates learned what life was like for Cassidy.
Encouraged by their reaction, Cassidy dared to dream of a day when everyone would have the knowledge needed to allow other people with epilepsy to be open and accepted. She also dreamed of a day set aside each year to acknowledge people with epilepsy and provide information for the general public.
Cassidy chose March 26, a day within Epilepsy Month, and made it happen. With the support of the Epilepsy Association of Nova Scotia (EANS) and the assistance of her school principal, they celebrated the first Purple Day for Epilepsy in 2008.
Cassidy chose purple because the internationally recognized colour for epilepsy is lavender.
EANS and the Anita Kaufmann Foundation in the United States are the global partners for the Purple Day campaign which launched internationally in 2009.
The Purple Day movement has grown to include Purple Day Ambassadors from coast to coast dedicated to increasing awareness of epilepsy and March 26 is celebrated in more than 80
countries around the world.
March 26 is a chance to educate the public about epilepsy. Epilepsy is one of the most common neurological disorders, affecting more than 300,000 people in Canada. It is a group of disorders of the central nervous system, specifically the brain and is characterized by recurrent, unprovoked seizures. Epilepsy can occur at any age and has many causes. Determining the specific cause for any one person’s epilepsy is often very difficult.
A seizure occurs when the normal electrical balance in the brain is lost. Information is transmitted to the brain along neurons and when these neurons either misfire or fail to fire, seizures are the physical effect of these brief, uncontrolled bursts of abnormal electrical activity.
There are two main types of epilepsy. During a generalized seizure, which can be convulsive or non-convulsive, one’s consciousness may be altered or physical movements such as jerking may take place. Complete consciousness is lost during the most common seizure, a tonic clonic (formerly termed grand mal.)
The second type is partial epilepsy where partial seizures begin with an abnormal burst of electrical activity in a restricted area of the brain. Partial seizures may be simple (with no loss of awareness), complex (with loss or alteration of awareness) or may secondarily generalize to involve both sides of the brain and result in convulsion.
Although very difficult to diagnose, doctors depend on a thorough evaluation of a seizure (including any witness observations), a physical exam, family history and clinical tests of the brain function and structure.
Epilepsy can be treated with medications, surgery, diet and vagus nerve stimulation, which is a device implanted near your collarbone that sends electrical signals to your brainstem, which in turn sends signals to certain parts of the brain. But it’s a delicate balance to find what treatment, or combination of treatments, is right for each person. For some, the majority of treatments have been exhausted and to no avail. This is known as refractory or intractable epilepsy.
For people living with epilepsy, the neurological disorder can have a profound effect physically, psychologically and socially and seriously impact their quality of life. A number of factors are thought to contribute to this including the unpredictability of seizures as well as the stigma associated with epilepsy.
This puts them at increased risk of depression, low self-esteem and even suicide.
Epilepsy can also affect an individual’s education, employment opportunities, independence and
notably their ability to drive and hold a driver’s licence.
But for Cassidy and the hundreds of thousands of Canadians living
with epilepsy, they desperately want the public to know they are just like anyone else and epilepsy is nothing to be afraid of.
Since she revealed her epilepsy to her friends and family, Cassidy said people accept it, but they don’t all understand.
“I have to explain to them what it is and what to do if they see me having a seizure and that there are different types of seizures,” she said.
“I tell them I’m the same as everyone else, I just have epilepsy and that doesn’t make me different. I do find it upsetting when I tell someone new that I have epilepsy and they look sad and ‘sorry to hear that.’ Even with all the hard work and Purple Day for Epilepsy, I still have to tell them not to feel bad for me because I’m just like them and can do anything and everything they can do.”
In 2012, the Canadian Government passed the Purple Day Act, thanks to the lobbying of EANS and Cassidy. The Honourable Geoff Regan, MP for Halifax West, introduced a private members bill and on June 28, 2012 it was enacted into law.
Regan also presented Cassidy with the Queen’s Diamond Jubilee medal in November 2012 for all her work to promote epilepsy awareness.
“I’m really happy that Purple Day has so much support. I always wanted Purple Day to be all around the world and now it is,” she said.
“I didn’t know there were so many people with epilepsy and that we all feel the same way.”
Now 14 years old, Cassidy isn’t resting on her accomplishments. She has more dreams and plans including changing the way media portrays epilepsy.
“A lot of time they show it wrong and that just makes all our hard work even harder,” she added.
In B.C., the Centre for Epilepsy is dedicated to creating and providing support, information and education to families and individuals living with epilepsy.
A common thread through all the information about epilepsy is not to be afraid should you witness someone having a seizure.
And Cassidy also addresses this issue, encouraging the public to find out exactly what a bystander can do to support someone.
“Epilepsy is like an electrical storm in my brain. I know I have complex partial seizures and that sometimes my seizures are not the same,” she said.
“Sometimes my body feels funny and sometimes it is really hard to explain and it can seem scary. I always get really tired afterwards and need to sleep.”
Six-year-old Nathan, from the Lower Mainland, put out a little book explaining his condition from his very young perspective.
Born with epilepsy, Nathan considers his epilepsy the result of his very special brain which sometimes experiences lightening storms.
“If I do have a lightening storm in my brain or seizure and I fall down and start to shake, don’t be afraid,” he writes.
“You can be my helper and go and get a teacher or an adult to help me stay safe and put something soft under my head, help me onto my side and stay with me to keep me safe.”
For the second year on March 26, thanks to the support from the City of Vancouver, BC Place is going purple.
Although most Purple Day activities are in the Lower Mainland, word is spreading and people are wearing purple in support of people living with epilepsy.
This is Quesnel’s first year celebrating Purple Day for Epilepsy. One woman explains what living with epilepsy is like for her.
“There’s no delicate way to live with epilepsy,” she said.
“One must constantly work with doctors to manage something that literally has a mind of its own. Because a seizure can happen at any time, even after 20 years seizure-free, epilepsy does not have a cure.”
She added that message came loud and clear in 2008 when, on a cold November day, she woke up in her car, in the ditch and in denial.
“With 11 days shy of five years grand-mal free, my heart was broken. It happened again,” she said.
For one of her acquaintances who has lived with epilepsy for a very long time, she finally confided to her coworker and was confronted with ‘But you don’t look like you have epilepsy?’
“This begs the question, what does epilepsy look like? To those who suffer, it is a loss of control like no other. Never knowing when a seizure will strike,” the Quesnel resident affirmed.
“Every time my eyes come into focus and I can’t communicate, I know it’s time to start all over. Medications will be changed, yet another EEG and MRI and in an instant I’m off the road. I drive everywhere and I love it. My job relies on it. I have lost my license five times since I was diagnosed and repeatedly have to rely on friends and family to go anywhere.
“Some days I’m at a complete loss.”
She added, to the outside world, epilepsy has no identity.
Society generally prefers to turn a blind eye, making it very easy to hide.
“I have lived in Quesnel since I was eight, have had epilepsy since I was 15 and am now 34. As capable as anyone, I did well in school, went to college, I frequently travel and I work in the public eye. No one knows,” she said.
“Do I hate epilepsy? Yes. Do I see myself differently because of it? No. I have never felt weird or like I don’t belong. While it’s true epilepsy has been a great burden in my life, it has given me strengths that society as a whole, aren’t aware exist. I fear it, I struggle with it, but it has made me who I am.
“Would I change all that? I don’t think so.
“Going by the numbers, there must be more than 1,000 people with epilepsy in Quesnel and surrounding areas and it’s time for somewhere to turn.
“A new support group, epilepsyquesnel, is in the works for residents to talk, ask, help and as many can relate – to vent.
“Epilepsy can be very hard to live with but support makes all the difference.”
If you have any questions on the upcoming group, email epilepsy.quesnel@ymail.com.