MEDIA RELEASE
16 October 2024
Wednesday 16 October 2024 – In Australia, 170 people die every year from Sudden Unexpected Death in Epilepsy (SUDEP).1 This occurs when an otherwise healthy person living with epilepsy dies suddenly and prematurely, with no identifiable cause of death.1 SUDEP occurs in approximately 1 in 1,000 adults with epilepsy and 1 in 4,500 children with epilepsy.2
This SUDEP Action Day, 16 October 2024, leading experts in epilepsy are raising awareness about the risks of SUDEP – a condition where 2 out of every 3 (69%) cases could be prevented.3 New findings released from Epilepsy Action Australia’s Impact of Care Burden Survey highlight the additional impact parent carers of children with severe epilepsy, who are at greater risk of SUDEP face.4
Professor Ingrid Scheffer AO, Chair of Paediatric Neurology Research, University of Melbourne said, “SUDEP is the most devastating complication of epilepsy where families lose a loved one with epilepsy out of the blue. Usually, the patient passes away unexpectedly overnight. We know that better seizure control reduces the risk of SUDEP, so we need to strive to improve seizure control and not accept ongoing seizures because of the serious risk that SUDEP poses.”
“We do not understand why SUDEP occurs –this is the next important step in research. We are working hard to find the cause of SUDEP through research but need to invest more resources to solve this terrible problem. If we can find the cause, then we can work together to reduce the risk of SUDEP for people living with epilepsy,” said Professor Scheffer.
Carol Ireland, CEO and Managing Director, Epilepsy Action Australia, speaking on behalf of a coalition of Australian epilepsy organisations said, “Unfortunately, I’ve met with many families who have experienced the devastating impact of SUDEP who were not even aware of the condition at the time. While researchers are currently investigating the causes of SUDEP, it’s important for Australians living with epilepsy and their families to understand the safety risks factors of the condition – every seizure can pose a risk.”
The Impact of Care Burden Survey findings show on average, more than half of parent carers spend at least 100 hours per week dedicated to looking after their child living with severe epilepsy.3 The level of care required for most parent caregivers has a severe impact on work, leading to unpaid time off, or in some cases inability to work at all.
“Parent carer responsibilities when looking after a child with severe epilepsy is often a 24/7 role. This means parent carers have little to no time at all when it comes to work, and this can significantly add to the stress and financial burden of care. Not to mention the social and emotional impacts, as caring can be socially isolating experience,” said Ms Ireland.
According to the survey, when it comes to managing day-to-day life, and overall health and wellbeing, parent caregivers said sleep, mental health, time for their relationships and time for themselves were most impacted by their caregiver responsibilities.4
Matt Preston, Renowned Food Critic, TV Personality has long advocated for greater awareness of SUDEP and supporting efforts to reduce epilepsy-related risks, after his brother William tragically died when he was just 22.
“A sudden death of a family member is devastating for families, siblings, and carers from any cause – a medical condition or traumatic accident. While I’m grateful that today we know more about epilepsy, the impact of seizures and most importantly the risk of SUDEP, unfortunately we are still losing too many lives to this condition. With more awareness and research about epilepsy we can hopefully prevent these tragic and unnecessary deaths,” said Matt Preston.
Currently there are many barriers to improving care for people living with rare and complex epilepsies, their carers and families. Driving greater awareness, momentum and engagement can help to address care gaps, from access to specialist epilepsy care, more screening for SUDEP risks, and enabling access to innovative treatments to reduce seizures.
“Whether you are living with severe epilepsy or for someone you care for, we encourage Australians to speak with their healthcare professionals about SUDEP,” said Ms Ireland.
If you need support, please contact the National Epilepsy Line – 1300 37 45 37 or the National Epilepsy Support Service – 1300 761 487.
Issued on behalf of Epilepsy Action Australia and supported by UCB Australia.
For further information, please contact: Melissa Rosenberg: 0410 500 014 / melissa.rosenberg@havasred.com
About SUDEP risk factors1
- Having active seizures can put you at higher risk of SUDEP.
- Your risk increases if you have tonic-clonic seizures, especially if they are frequent, happen at night or when you are asleep.
- If you sleep alone and have tonic-clonic seizures, you are at higher risk.
- Not taking medications as prescribed or frequently forgetting to take medications is a risk factor.
It is important to discuss your risks and concerns with your healthcare professional who can help you assess your own risks and put steps in place to reduce them.
About Epilepsy Action Australia
With approximately 270,000 people living with epilepsy in this country, Epilepsy Action Australia is leading the way in ensuring those affected have the skills and knowledge to live the very best life possible. We also strive to give parents, teachers, caregivers, support workers, doctors and nurses the confidence, resources and information they need to support their specific needs.
As the leading and oldest provider of epilepsy services nationwide, we focus on improving self-management skills, increasing wider public understanding of this devastating condition, and are at the forefront of partnering and funding research into interventions and treatments.
About Epilepsy Australia
Epilepsy Australia, formed in 2000, is the national partnership of five state and territory-based epilepsy service providers throughout Australia. Collectively, Epilepsy Australia holds a national perspective that recognises the legitimacy and diversity of all people living with epilepsy and ensures they are able to participate, as fully as possible, in education, work, and social settings.
Epilepsy Australia provides the latest information, support, advice, and education and training, to equip families, carers, schools, aged care and disability organisations and workplaces to provide a safe and inclusive environment for people with epilepsy. We advocate for the rights of people with epilepsy through the Parliamentary Friends of Epilepsy, engage in cutting-edge research to find a cure and undertake longitudinal psychosocial research into the diverse needs of people with epilepsy.
References
- The Florey. Sudden unexpected death in epilepsy. Available at: Sudden unexpected death in epilepsy | Research | The Florey
- Epilepsy Action Australia. Fact Sheet: SUDEP. Available at: https://www.epilepsy.org.au/wp-content/uploads/2023/04/20230404_Factsheet_SUDEP.pdf
- Sveinsson O, et al. Circumstances of SUDEP: A nationwide population-based case series. Epilepsia. 2018;59(5):1074-82
- EAA Impact of Care Burden Survey. Todd, L. 2024. Impact of Carer Burden [Unpublished raw data]. Epilepsy Action Australia
