‘Its been a real battle:’ N.S. man living with epilepsy hopes to spread awareness

March is Epilepsy Awareness Month and advocates are hoping to spread the word about the disorder.

Greg Van De Moortele has been living with epilepsy since he was nine-years-old.

“I just woke up one morning with a headache and a fever and I went out and laid down on the couch and asked my younger brother to go get me a cold face cloth, and when he came back I was having my first seizure,” he says.

Van De Moortele says he’s been to the operating room more than 17 times and that his longest seizure lasted more than 11 hours.

“It’s been a real battle, because first they tried all the medications, and every time a new medication would come they’d be trying it on me,” he says.

“I’ve had three pieces of my brain removed and I have a deep brain stimulator. The wire comes up and they drilled two holes in my skull and put needles … through my brain over into my right temporal lobe.”

The debilitating disease causes reoccurring and unprovoked seizures and affects people of all ages.

Angela McCarthy, board chair of the Epilepsy Association of the Maritimes, says 5,000 to 10,000 people are living with epilepsy in Nova Scotia.

March is Epilepsy Awareness Month, but McCarthy says it should be highlighted year-round.

“Because the people that live with seizures, live with seizures 24/7,” says McCarthy.

She says people with epilepsy often feel isolated and more education on the issue can help curtail that.

“It’s important to show those that live (with) epilepsy that they’re not alone … perhaps that they’re heard, they’re seen and they’re understood. It’s also important to have that education and awareness so that the stigmas and the discrimination that are out there are being busted,” she says.

She also says every bit of information given to the public about the topic can help save lives.

“For every bit of awareness we do and education we do, that means there’s one more person who knows what to do, the correct things to do, if they see somebody having a seizure,” says McCarthy.

At 52-years-old, Van De Moortele is still dealing with the condition day-by-day.

In his spare time, he helps patients or parents of young patients dealing with the disease by answering their questions on Facebook.

“It’s only a slight amount that are able to live a normal life because of the epilepsy, so I try to keep them from being depressed and sad about it, because I know I’ll never be seizure free, so I just want to use my experience to help others,” says Van De Moortele.

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