'the little talked about disorder'
by Sandy Lindsay

March 7, 2017


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It is a health disorder that few know about ... epilepsy and is one that is physical.  It is not a mental health issue or an illness.  It is a neurological 'misfiring' in the electrical circuit known as ... the brain. 

Electrical activity in the brain tells the body what to do but, when the brain's normal signals are interrupted, a seizure can result and it is often referred to as an 'electrical storm' in the brain.

When an individual has what is known as a seizure, it can take on a wide variety of symptoms from staring, confusion, going suddenly to sleep, having convulsions or seizures, a lack of control to labored breathing and abnormal heartbeat.

While it can be triggered by illness or injury, there really is no known cause and it is a disorder of  the central nervous system that an individual can also be born with or develop in childhood.

There are several types of seizures such as focal/partial; generalized; circulatory/respiratory systems; muscular and digestive to reproductive which makes it a difficult disorder to diagnose.

In Canada, one in 100 people live with epilepsy and, in Ontario, there are 65,000.  Of those 10,000 are children and 55,000 adults and, each year, more than 6,000 are diagnosed.

While there is presently no cure, between 70 and 80 per cent of those with the disorder are able to control their symptoms with medication.

Historically, epilepsy has been known since the  ancient times of the Babylonians. However, the first anti-epileptic drugs weren't introduced until more than a century ago.  By the 1920s, doctors had learned to interpret the electrical activity of the brain.

Today, the treatments vary with drug therapy being the first-line along with diet, avoidance of alcohol and getting enough sleep.

There have been, and are, many famous people who have epilepsy: Prince, Elton John, Danny Glover, Neil Young, Theodore Roosevelt, Truman Capote, George Gershwin, Budd Abott, rapper Lil Wayne and many more that include well-known athletes.

Danny Glover and Neil Young are both spokespersons for Epilepsy as is rapper Lil Wayne.  Glover volunteers his time speaking to create awareness while also contributing to the organization's programs for children.

Neil Young lives with controlled epilepsy and also helps his daughter who also has the condition.

More recently, famous singer Susan Boyle of Britain's Got Talent, also talks about how she has struggled with epilepsy since childhood and how she was teased for being 'different'.

More locally, and one who is also more than willing to talk about the disorder, is Mary Halbert of Southampton.  Halbert worked in Ottawa as a researcher and, at one time, was also able to drive.  "Unfortunately, I had a seizure and was taken to a hospital where the doctor asked if I drove.  When I said yes .. he said, 'not anymore'!"

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"I've had the disorder since I was 13," she says.  "Most of the time, I can feel when I am about to have a 'session' and usually end up going to sleep.  The Southampton hospital has been wonderful and I sometimes have to pay them a visit when I am about to have a seizure.  When it first happened, Dr. Billing was amazing at recognizing it."

"It's unfortunate that there still seems to be a stigma around epilepsy that stems back to ancient times when people thought someone going through a seizure was possessed or controlled by the supernatural.  In medieval times, St. Valentine was actually the patron saint of people with epilepsy.  Then, in 1873, a London neurologist, Hughlinas Jackson, proposed that it was sudden and brief electro-chemical discharges of energy in the brain that caused the seizures," adds Halbert.

Today, Halbert, like the majority of people with epilepsy, leads a productive life.  She works as a supervisor at Southampton's Tim Horton's and organizes all their special event functions.  "The owners here, Dave and Linda (Falconer), have been wonderful to me," says Halbert, "and I love working in a job where there's public interaction."

Halbert also points out that there is little to no government funding into research on epilepsy.  "The main office for this area is in London and there aren't even enough staff to help up here.  That's why I'm more than happy to create awareness.  It's nothing to be ashamed or embarrassed about ... it's just the way our brain 'misfires'! she smiles.

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