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International SUDEP Action Day – 23 October 2019

Difficult Conversations Are Needed

23 October is International SUDEP Action Day.

For reasons that are poorly understood, people with epilepsy have an increased risk of dying suddenly for no discernible reason. 

Epilepsy – A Focus on Tasmania, released early this month highlighted that across Australia approximately 300 people die from epilepsy each year. The cause of these deaths can be due to having a seizure while driving or swimming, a brain injury, stroke or accidents – but half are from causes unknown.

The sudden, unexpected death of someone with epilepsy is known as SUDEP. It can occur in people who were otherwise well, and in whom no other cause of death can be found.

Epilepsy Tasmania CEO, Ms Wendy Groot, said “No one knows what causes SUDEP and we can’t predict who will be affected. Today is International SUDEP Action Day and it’s time to have the conversation about the heartbreaking impact epilepsy can have.”

“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,” said Ms Groot. “Or that they are less likely to live to the general life expectancy of 80 to 84 years of age; 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,” said Ms Groot.

Epilepsy Tasmania’s approach today is to remind people with epilepsy and their families about the importance of taking their medications exactly as advised by their health specialists; of being extra careful around water, heat sources and vehicles; of staying in good physical health; and of 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,” said Ms Groot.

“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.”

SUDEP Action Day 2019 MR