Shining a light on a hidden disorder – epilepsy

Wednesday marked Purple Day, an international movement to get those with epilepsy talking about it.

By Nick Holland

Janice Pace checks her calendar constantly because she has memory loss from having so many seizures. (Nick Holland/Peninsula News)
Janice Pace checks her calendar constantly because she has memory loss from having so many seizures. (Nick Holland/Peninsula News)

At any moment Janice Pace could have a seizure. She can’t predict when she’s going to have one, but after having them her entire life, it has become somewhat of a routine.

The single mother lives in Halifax and has epilepsy. Pace has three types of seizures. Her eyes will roll upwards, stare off into the distance, or Pace will drop to the floor and convulse.

She won’t remember any of it.

“I have no control over it so there’s nothing I can do,” she said. “I went a couple years that I was seizure free, (but) the last few years my health has deteriorated.”

Pace is on medication but the side effects caused nerve damage in her legs and now she finds it difficult to walk.

She also has two shoulder replacements. Her doctor told her she couldn’t work anymore.

Pace once worked as a homecare worker but now homecare workers come to her home.

Purple Day is celebrated on March 26 to promote awareness about epilepsy. (Nick Holland/Peninsula News)
Purple Day is celebrated on March 26 to promote awareness about epilepsy. (Nick Holland/Peninsula News)

Drastic effects to the brain

Every time someone has a seizure they lose brain cells, resulting in side effects. One of those side effects Pace has encountered is long-term and short-term memory loss.

“I have problems remembering certain things. People can ask me certain things and I can’t recall it,” she said. “I find new ways to try to deal with things. I have my own calendar that I keep everything ahead of time.”

Pace now volunteers as a co-ordinator for the Epilepsy Association of Nova Scotia.

March 26 is Purple Day

Wednesday marked Purple Day, an international movement to get those with epilepsy talking about it. For Pace, this day is important.

“It’s a chance to try to bring recognition around the world to people like me with epilepsy because it’s one of the hidden disorders that people don’t see,” she said. “They’re scared of it and people don’t see it as a disorder, but it is.”

Cassidy Megan started Purple Day with the help of the Anita Kaufmann Foundation and the Epilepsy Association of Nova Scotia. The Nova Scotian was in Grade 3 when she created the movement in 2008.

Cassidy Megan founded Purple Day. Her junior high school had an assembly honouring her movement. (Nick Holland/Peninsula News)
Cassidy Megan founded Purple Day. Her junior high school had an assembly honouring her movement. (Nick Holland/Peninsula News)

The now 15-year-old junior high student has epilepsy.

“I felt really scared and alone, and I was embarrassed to tell anyone,” she said. “I really didn’t want other people to feel that way.”

Her seizures left her feeling so scared and alone that she wanted to spread awareness about what it’s like living with epilepsy.

And spread awareness she did.

Purple Day is now recognized in over 70 countries and on every continent, including Antarctica.

“I feel really happy for how much Purple Day has grown,” Megan said.

Megan still has seizures. They don’t come as often as they used to, but that’s because of the medication she’s on. She will never know when one will come on.

“I pretty much just zone out of everything that is going on, go into my own little world, or pretty much just start crying,” she said. Just like Pace, Megan can’t control any of the seizures.

But Megan’s campaign has been so successful that it grabbed the attention of Hollywood celebrities and even the Queen of England.

It was started by a little girl continues to grow and to spread awareness about a hidden disorder that still affects both Megan and Pace.