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Health

Epilepsy diagnosis at 28 may have been why Kay's teachers thought she was a 'daydreamer'

Kay Guascoine was impacted by epilepsy as a young child but didn't get a diagnosis until she was 28. (Supplied: Kay Guascoine)

When Kay Guascoine was a child her school teachers described her as a "daydreamer", but her vacant stare in the classroom hid a serious medical condition that took almost two decades to uncover.

"I was diagnosed when I was 28 but we think that I've had epilepsy my entire life," Ms Guascoine said.

The central Queensland teacher, now 41, is on a mission to create greater awareness of the condition.

Epilepsy is a tendency to have unprovoked seizures which is caused by unusual electrical activity in the brain.

According to Epilepsy Queensland, between three to four per cent of the population will have epilepsy in their lifetime, while up to five people can die from the condition every week in Australia.

School report cards

It was not until after Ms Guascoine collapsed at work from a seizure, aged 28, that she got answers.

"I said to my colleague that I didn't feel too well. I fell and hit my head on the side of the desk," she said.

Ms Guascoine, pictured with her nephew on her 41st birthday, says it took her a long time to get a diagnosis. (Supplied: Kay Guascoine)

The teacher was put in touch with a neurologist in Brisbane who then pieced together a diagnosis using her symptoms and school report cards.

"He [the neurologist] goes, 'oh [I'm] pulling up a couple of interesting things out of these," Ms Guascoine said.

"'Number one, a lot of your teachers were saying you're a bit of a daydreamer, that you're easily distracted by things going on, and number two, you don't remember your number facts'.

"He sat me down and said 'what I can tell you is that all of what you're telling me, we can put together that you are experiencing seizure activity'."

Ms Guascoine was diagnosed with focal seizures — a type of epilepsy that can involve stiffening of the limbs, feelings of déjà vu, unpleasant smells or tastes, and nausea.

"The ones [symptoms] that I have typically last for about five to 10 seconds and you could honestly be talking to me and not even be aware that I'm having one," she said.

"I'll have no awareness that I've had the seizure and no knowledge that time has passed."

Challenging stigma

The month of March, known as Make March Purple month, is used to raise awareness of epilepsy.

Epilepsy Queensland CEO Chris Dougherty said despite it being the world's most common neurological condition, awareness was still lacking.

Chris Dougherty said more than 50 per cent of people would never know the cause of their epilepsy. (Supplied: Epilepsy Queensland)

"It still holds a lot of stigma and discrimination. It's not well understood by the community generally," he said.

Mr Dougherty said more than 50 per cent of people would never know the cause of their epilepsy.

He said there are more than 40 different syndromes associated with the condition.

"It can not only impact the individual's ability to live a full life they can struggle to drive, to participate in the workforce, in schools and workplaces. It has an impact on families," he said.

Ms Guascoine said at one point her epilepsy medication damaged her liver and she was forced to go without it for six months.

During that time she recorded 62 seizures in a single day.

She said while her condition was now under control with medication, it continued to impact her short-term memory, her photosensitivity to lights, and prevented her from driving.

It has also been a struggle having a non-visible disability.

"Everything looks okay until it's not," she said.

"It can go from me blankly staring to having slurred speech to being on the floor with jerky [movements].

"It can look like I'm stumbling around drunk and for a lot of people that can be really embarrassing."

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