Epilepsy, a misunderstood condition

Sierra Adams fears the next time she’ll have a seizure, not knowing when or where it could happen.

The 11-year-old Kitchener girl suffered her first big seizure a couple months ago. She was at a neighbour’s house when she fell, cutting her head on the concrete porch.

“I feel mostly scared in case I have another one,” Sierra said. “And I also feel bad for the people there who had to see that.”

Her second intense seizure was at school in the playground, but luckily that time she didn’t hurt herself when she dropped to the ground. When she woke up, she was surrounded by fellow students.

“It’s kind of scary because you don’t know you had one and then you see all kinds of people crying,” Sierra said.

There’s a lot of misunderstanding and fear about the disorder, said Catherine Bodden, executive director of Epilepsy Waterloo-Wellington.

Epilepsy is a brain disorder in which there are disturbances in the normal activity of neurons, causing strange sensations and seizures. Epilepsy has many possible causes, such as abnormal brain development, illness and brain damage. Often the cause is unknown.

To combat the misconceptions, a special broadcast advertising campaign starts this month called End Trash Talk. The television and radio ads, sponsored by the Canadian Epilepsy Alliance, feature youth with the disorder sharing their stories and information.

Most people think of epilepsy as severe seizures that cause a person to collapse, lose consciousness, and have violent shaking of the whole body, Bodden said. But those tonic-clonic seizures, previously known as grand mal, are not the most common.

Tonic seizures cause muscles to stiffen, while clonic seizures cause repeated jerking of muscles. People with tonic-clonic seizures experience both.

There are many different types of seizures ranging in severity.

“Every individual has a different type of seizure,” Bodden said.

Bodden herself had complex partial seizures, short-lived episodes that basically cause her to zone out temporarily.

Her epilepsy was caused by a long fall in a barn when she was a teenager. Scar tissue from the injury caused her as many as 30 seizures a day, and her life was in jeopardy. Surgery in 1995 removed the affected parts of her brain and dramatically reduced the seizures.

Epilepsy is not only tough on the people with the disorder.

“The family members actually have a harder time dealing with it,” Bodden said.

The organization gets up to 10 calls a day from people looking for information and support, both people with the disorder and family members. Many people with epilepsy face discrimination at work.

“We have a lot of people fired from their jobs,” Bodden said.

For that reason, many people keep their epilepsy secret. Often that silence extends to friends and acquaintances because many people know little about the disorder and are even afraid of what may happen and how they’ll deal with a seizure.

That apprehension is certainly an issue encountered by Ashley Johns, who had her first seizure in Grade 10.

“People don’t really understand,” the 22-year-old said.

Although Johns, too, knew little about the disorder until she was diagnosed after suffering a second severe seizure in just a couple months.

Both lasted five minutes. The first was frightening for Johns, who woke up in the middle of the night and went to the bathroom to get a drink of water.

“I just remember looking at myself in the mirror and seeing nothing. I was really confused,” Johns said.

Her father caught her before her head hit the floor, and she was taken by ambulance to hospital.

Five years passed before finding the right combination of medicine to control her seizures — not an unusual length, Bodden said.

Now a fourth-year student at Wilfrid Laurier University, Johns has to be careful to look after herself. She’s prone to seizures — occasionally big ones and also smaller ones where she’s unresponsive for a few minutes or seconds — when she’s tired, stressed or not eating well.

“I have to know my limits and be able to take care of myself,” Johns said.

The main thing she was concerned about when she was diagnosed was not being able to drive. A person’s licence is suspended for a year after suffering a debilitating seizure.

Johns had her licence for just four months before having a big seizure in March.

“It’s frustrating to have to rely on people to get around,” she said.

Sierra has to look after herself too, wearing a hat and sunglasses outdoors on bright days because sun seems to trigger seizures for her.

She was diagnosed at nine, after experiencing seizures where she would wave her arms in front of her face. Myoclonic seizures are brief jerks of muscles.

“We went to this doctor and he said it was epilepsy,” said the Grade 6 student who now takes medicine morning and night.

“I didn’t even know what that word meant, so I had to ask them.”

Find out more about the neurological disorder at www.epilepsymatters.com, and the awareness campaign at www.endtrashtalk.com.

By Johanna Weidner, Record staff

jweidner@therecord.com