Keeping epilepsy in mind
OLYMPIANS, sporting legends, doctors and everyday heroes have joined forces to release landmark research into the country's most common, chronic brain disorder affecting one-in-100 Queenslanders.
The Australian-first longitudinal study paints a candid picture of the psychological, social and physical challenges encountered by people living with epilepsy.
According to Dr Dan McLaughlin, neurologist and Committee Member for The Epilepsy Society of Australia, Brisbane, the new research reveals the significant burden of uncontrolled epilepsy on people's lives.
"Current literature suggests that 10 per cent of Australians will have a seizure during their lifetime, one-third of whom will be diagnosed with epilepsy.
"New data from the Epilepsy Australia and Epilepsy Foundation of Victoria national epilepsy longitudinal study - Needs, perceptions and experiences of people with epilepsy - show more than one-in-two participants have been hospitalised or injured due to epileptic seizures," said Dr McLaughlin.
"The number of seizures a person experiences is strongly related to their Quality of Life. Disturbingly, one-in-five research respondents had experienced more than 20 seizures in just 12 months.
"More than half (52%) of the research respondents living with epilepsy had experienced depression, one highlighting the psychological toll of the disorder," Dr McLaughlin said.
"Furthermore, disappointingly one-in-two study participants reported unfair treatment in the workplace, school, community organisation, public place or at home due to their epilepsy."
Earlier this year, Brisbane lawyer living with epilepsy, Chiara Wood, 29, was forced cut down her work hours to part-time as a result of her recurrent seizures.
"The stress and fatigue of full-time work were definitely seizure triggers. Fortunately, I am now able to return to work full-time after my neurologist re-assessed my condition, developing a tailored epilepsy management plan for me. I am experiencing fewer seizures and my epilepsy is back under control.
"Nowadays, I try not to allow epilepsy to stop me from making the most out of life, but it's still hard to know when my next seizure will be," said Chiara.
"I did have my licence but I don't drive anymore because it was too dangerous for me to be on the road. Not being able to drive is obviously a problem in terms of being independent and having to get around.
"Luckily I have a really supportive family and great friends who can be called on whenever I need a hand," Chiara said.
Director of the Centre for Advanced Imaging, University of Queensland, Professor David Reutens, warns epilepsy does not occur in isolation.
"The social burden and stigma of this common neurological disorder has a ripple effect on family members, carers and the wider community. Up to 3.5 million Australians are directly and indirectly affected by epilepsy over their lifetime."
"Moreover, among five-to-29 year olds, epilepsy ranks in the top five causes of avoidable deaths," said Prof Reutens.
"Australians across all age groups living with epilepsy have mortality rate two-to-three times greater than the general population, causing approximately 250 deaths per year."
To learn more or to register for the longitudinal study, call (03) 9805 9111 or visit Epinet.