'I've often woken to find a stranger's hand in my mouth'
JOANNE Scott has woken to find a stranger's hand in her mouth more than once.
Excitement, stress, low sugar, and tiredness can all be a trigger for a seizure for Ms Scott. She estimates every month she has four to six seizures.
She is one of 100,000 children and adults in Queensland with epilepsy. Epilepsy Queensland estimates one in 10 people will have a seizure in their lifetime.
However, Ms Scott said very few people knew how to look after someone having a seizure.
She said the lack of first aid training had led to well-meaning, but dangerous and uncomfortable first aid treatment on people with epilepsy.
Old first aid training recommended restraining a person and holding their tongues during a seizure. But this is "one of the worst things you can do for someone having a seizure," Ms Scott said.
"People really need to have the correct information when talking about this."
To address the shocking lack of seizure first aid training, Ms Scott has chosen to wear purple today to celebrate world Purple Day.
Since she was diagnosed at 18 months old, Ms Scott has learned to live around her seizures.
Christmas, birthdays and holidays would always be a nervous time for her parents when she was young as excitement was a trigger for her seizures.
"Mum and dad worried sick about me," she said.
In school, she was teased for having to wear a bright yellow diving cap in the pool - so lifesavers would be alerted if she had an seizure in the water.
At age 45, Ms Scott said she was still frustrated by the lack of awareness and discrimination against people with epilepsy, including in the workplace.
When applying for jobs, she said "99 per cent of employers have accepted me".
Inevitably, Ms Scott said after a seizure in the workplace she would notice her hours would be reduced or her shifts scaled back.
When she asked why, she said her employers would deny that it was because of her epilepsy.
It's was a hard thing to accept for a woman who enjoys her independence.
"I just have to remember to take it one day at a time."
Today she is raising money and awareness of epilepsy for the 11th year of the worldwide Purple Day. So far she has raised $570 for Epilepsy Queensland.