Epilepsy affects more than 50 million people world-wide, more than 300,000 Canadians and numerous families in the Flin Flon community.
Melissa Danis, of Creighton, was diagnosed with Juvenile Myoclonic Epilepsy in 1995 and was recently named the ambassador for the north with the Canadian Epilepsy Alliance.
Danis not only lives with the disease herself, but also has two children with different forms of epilepsy.
Purple Day has continued to bring awareness about epilepsy since it’s inception in 2008 by a girl in Nova Scotia.
Danis now wants to show the same support from the Flin Flon, Creighton and Denare Beach area by participating in the Mar. 26 event.
The mother of two is encouraging all area residents to wear purple next Thursday and to help “dispel the myths of epilepsy.”
Danis’ daughter Caileigh, five, attends Ecole McIssac School and was diagnosed with Generalized Epilepsy in July 2013. Her son Owen, four, was diagnosed with Occipital Epilepsy in January 2014.
The mother of two hopes that by hosting Purple Day the “nasty stigma” that surrounds epilepsy can be removed.
“Epilepsy is more prevalent than cerebral palsy, multiple sclerosis and a lot of cancers,” said Danis, noting that one person in 100 has been diagnosed with a form of epilepsy.
“People don’t realize how many people they know that actually have epilepsy, because there is still such a nasty stigma attached to it. People are afraid to talk about it. Even telling people about my kids and all the challenges they have gone through, like getting Caileigh in a happy, healthy position in school -- it’s like you walk into the conversation guarded already.
“You’re afraid of what people are going to think because they are afraid of it. It’s the unknown,” said Danis. “It’s not like a lot of other diseases that are, for lack of a better term, predictable.”
Wear purple
Purple Day started in 2008 when a young Nova Scotia girl wanted to help spread awareness about a disease she knew all too well.
The now-global initiative has built over the past eight years, with a sea of purple making its way through office buildings, schools and large centres.
Some area schools and businesses are already on board to participate in Purple Day, 2015.
“It’s not asking a lot of people,” said Danis, hoping to see lots of people in Flin Flon, Creighton and Denare Beach dressed in purple on Mar. 26.
“We’re not asking you to buy something, we’re not asking you to fundraise, we’re not asking you to stay up all night. [We’re just asking you to] wear something purple, read the pamphlet and make yourself aware,” she said.
As a mother of two children with epilepsy, Danis hopes to bring a form of normalcy to not only her family life, but also those in the community dealing with similar issues.
“I’m just hoping it will make a difference, spread the word and that people will begin to realize that it’s not just some guy’s cousin. It’s not just a random person. It’s people close to you, in your community, that are dealing with this,” she said.
“People can function with epilepsy,” said Danis. “There doesn’t have to be this nasty stigma surrounding it.”
Danis is the community’s first ambassador for epilepsy, a title she takes very seriously.
“It’s a pretty emotional thing to be the first person in this community to kind of carry the torch for it, so to speak,” she said. “It’s scary. As an epileptic and a parent of two epileptic children, it’s scary to have the potential of confrontation with anything, and having to fight a disease like this in a remote community, it’s almost like every time it comes up, it’s another fight, another battle.”
Danis moved to the Creighton area with her two children and husband Mike in 2012 from Saskatoon.
Danis received her diagnosis at the age of 15, and is no stranger to epilepsy support groups in the city, which offered a continuous outpouring of support.
Future goals
Run For Epilepsy is a series of runs held in various Canadian cities, and as the new ambassador for the North, Danis hopes to bring a run to the community in due time.
Danis also hopes to someday be able to bring a chapter of Canadian Epilepsy Alliance to the Flin Flon, Creighton and Denare Beach area.
For now, Danis encourages everyone to wear purple on Mar. 26 and to become more aware about epilepsy.
For more information about epilepsy and Purple Day, visit www.purpleday.org.
