Frontline paramedics often respond to seizure-related calls. In support of Purple Day

Dispelling the stigma

Epilepsy affects 70 million people worldwide and 1 in 100 in Canada.

  • Mar. 24, 2016 10:00 a.m.

ANNIE GALLANT

Observer Reporter

Epilepsy affects 70 million people worldwide and 1 in 100 in Canada. There are more than twice as many with epilepsy in Canada as the number of people with cerebral palsy, muscular dystrophy, multiple sclerosis and cystic fibrosis combined.

World Health Organization (WHO) states epilepsy as a worldwide serious health concern, accounting for one per cent of the

global burden of disease – equivalent to lung cancer in men and breast cancer in women.

In 2014 epilepsyQuesnel (eQ) put the city on the map in a vital provincial endeavour for those with epilepsy, and the second-to-none care at Vancouver General Hospital’s Seizure Investigation Unit (SIU).

Though the SIU provides testing for answers which cannot be found through any other avenue, there are only two beds.

eQ’s fundraising is to help VGH Epilepsy Clinic’s current goal of beds 3 and 4.

Purple Day March 26 started in 2008 when Cassidy Megan of Nova Scotia, who was diagnosed with epilepsy, asked her principal if she could organize a day where students wore shades of purple.

Within four years it became celebrated internationally and on June 28, 2012, the Purple Day Act in Canada (Bill C-278) received Royal Assent.

March 26 became the National Purple Day in our country. Cassidy is now 17 and Purple Day is recognized across 70 countries worldwide.

Every day in Canada 42 people are diagnosed with epilepsy. In B.C. more than 40,000 people (approximately 8,000 children, 32,000 adults) have epilepsy and one-third of these patients have refractory epilepsy, which means medication doesn’t work well, or at all, to control seizures.

Quesnel has approximately 300 residents who suffer from this disease.

G.R. Baker Memorial Hospital’s chief of staff Dr. Dietrich Furstenburg said most people are aware of the disease, but what they’re not aware of is how common epilepsy is.

“What needs to be addressed is the stigma around epilepsy.”

He added regarding what hospital staff see in the hospital emergency room is usually after the patient has had a seizure.

“For the primary physician its about appropriate level of knowledge and appropriately managed. However, we do see a few patients who aren’t responding to medications.”

He also said the primary physician is the middleman between patient and specialist to provide the most appropriate care for epilepsy.

“As with any chronic disease management by the primary physician and the patient is essential.”

The mainstream diagnosis of epilepsy is given after two seizures due to an unknown cause (known causes include stroke, brain damage, diabetes, meningitis, alcohol/drug withdrawal.)

In order to receive a class 5 driver’s license you must be seizure free for six months in B.C.

To receive or maintain a class 1, 2, 3 or 4 driver’s licence you must be five years seizure-free.

About two-thirds of those with refractory (not controlled by medications) epilepsy are potential candidates for life-altering surgery, which has the goal of decreasing or eliminating seizures,” Dr. Manouchehr Javidan, epileptologist at Vancouver General Hospital Epilepsy Clinic said.

“The first step to determine if a patient is a brain surgery candidate is the VGH Seizure Investigation Unit (SIU), with a stay of seven to 10 days. Sadly, from the time I was referred to the epilepsy team at VGH to the day I was confirmed as a surgery candidate was almost two years, most of which was spent on the SIU waiting list. In that time I had more than 200 neuro-damaging and life-risking seizures,” Natasha Wasmuth, founder of eQ, said.

Currently, the wait to be admitted to the SIU has increased from two years to three.

Epileptologist Dr. Chantelle Hrazdil added, “While many people understandably fear the prospect of brain surgery, the cumulative risks of injury or death related to ongoing poorly controlled seizures tends to far outweigh the relatively low approximate five per cent risk of a surgical complication.”

 

 

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