26 Mar Today is Purple Day for Epilepsy Awareness
What is Purple Day?
Purple Day (26th March) is a global initiative dedicated to raising epilepsy awareness. Purple Day was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada. Motivated by her own struggles with epilepsy, Cassidy started Purple Day to get people talking about the condition and to let those impacted by seizures know that they are not alone. She named the day, Purple Day after the internationally recognised colour for epilepsy, lavender.
Purple Day has grown into a well known and supported national awareness day with thousands of people across Australia gathering within their community, education and corporate sectors to raise much needed awareness and funds for those affected by epilepsy.
28 years seizure-free
How surgery stopped Faye’s epilepsy
Epileptic seizures dogged the first 40 years of Faye Tregea’s life. They began when she was 10 months old and barely a week went by without at least one seizure.
Faye’s seizures were periods of about 20 seconds characterised by total blankness. She would stand, sit or lay and stare into space completely unaware of anything around her.
When the emptiness stopped and her consciousness returned, Faye would once again try to get on with her life – all the while knowing she’d never be like other people.
“I would have easily had over 1000 seizures. Sometimes I felt them coming, sometimes I didn’t. School life wasn’t good,” the 68 year- old said.
“The day I had the first one, when I was just 10 months old, I’d had the triple antigen vaccine that day. Doctors told my parents that might have caused it…but they also said it could have been from eating a banana. It sounds funny now, but no one knew.
“Many years later it was confirmed that I had some scar tissue on my brain from some knock to the head at some stage.
“The fits are hard to explain, but as an example I could be sitting there knitting and I’d drop the knitting needles but my hands and fingers would continue to knit and I’d just be staring into space completely empty…it’s really difficult to tell people what it was like.”
Faye said her childhood and adolescence were full of seizures, which resulted in chronic sleepiness and an overwhelming sense of helplessness.
“When I was really young, about four or five, I think I can remember mum and dad explaining the seizures to me when I had them. It was after them that I’d be confused about what had happened,” she said.
“There were lots and lots of doctors and trips to Melbourne but it got worse, not better. I met my husband John when I was 18 and we married just before I turned 21.
“We started a family and had three children and when I was pregnant I never had a seizure. It wasn’t clear why…Dr Fox always just said ‘nature takes care of its own’.”
Faye said the seizures were as bad as they had ever been by the time she turned 40 and local GP Dr Peter Oliver found a neurologist in Melbourne to try and find an answer.
“They did some testing. I was in a chair by day and bed by night with sensors connected to my head and wires through my skin
near my jaw. I had scans as well and they managed to pinpoint the scar tissue sitting on my brain,” she said.
“I was offered surgery that had an 80 per cent chance of fixing it, but that also carried a risk of stroke. It was scary for the family – our children were teenagers and understood.
“The surgery took five hours. They opened up my skull, took out the dead scar tissue without leaving a new scar and put me back together.
“I remember waking up feeling pretty good. They took me for testing to make sure my motor skills were still fine and they were. I haven’t had a single seizure since, which John always says is so much better than us winning Tattslotto.”
Faye said the last 28 years had easily been the best years of her life.
March is Epilepsy Awareness Month and Purple Day, for Epilepsy, is on March 26.