People living with epilepsy are three-times more likely to suffer a premature death compared to the general population.
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However most epileptics are unaware of this confronting statistic, according to Epilepsy Tasmania, who is using International SUDEP Action Day to draw attention to the seizure disorder.
SUDEP is the sudden, unexpected death of someone with epilepsy. More than 20,000 Tasmanians have epilepsy, but through care and support, the condition directly affects about one-fifth of the population.
With more than 300 Australians dying from epilepsy each year, Epilepsy Tasmania chief executive Wendy Groot said it was time to have the conversation about the condition's heartbreaking impact.
"No one knows what causes SUDEP," she said.
"It is confronting to know that most people with epilepsy are unaware their risk of premature death is three times that of the general population.
"The mean life expectancy for someone with epilepsy is just 52 years old.
"It's often easier for us to avoid talking about death, to shy away from raw and potentially heartbreaking conversations."
The message comes on the back of the Epilepsy - A Focus on Tasmania report.
Released earlier last month, the report showed Tasmania had the highest prevalence of epilepsy in Australia.
The condition was also found to be the second-most burdensome to live with, after dementia.
Ms Groot said it was important to remind people with epilepsy and their families about the importance of taking medications exactly as advised, being careful around water, heat sources and vehicles and trying to prevent head injuries.
"We are a good Tasmanian resource for people wanting to learn more and our nurse, social worker and support staff are all available to continue this conversation in person, over the phone or on our Facebook page," she said.
"Only with the courage to have these difficult conversations can we begin to prioritise the importance of research and of finding a cure for epilepsy."