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Understanding and preventing SUDEP


Date Published: June 27, 2024

Author: Natalie Powell

Sudden Unexpected Death in Epilepsy, or SUDEP, accounts for about half of all deaths in people living with the condition. Reducing the risk of mortality is of great importance and is one of the Epilepsy Research Institute’s key research themes. In this feature, we look at some examples of research that will help us better understand SUDEP – and ultimately save lives.

Tragically, every day, three people in the UK die from epilepsy-related deaths. These deaths take people away from those that love them, leaving dreams unfulfilled and questions unanswered.

For about half of these people, their deaths have no apparent cause, and so are classified as Sudden Unexpected Death in Epilepsy (SUDEP).

Many of these deaths are potentially preventable, but to prevent them we need to better understand the underlying mechanisms so we can identify those at risk. We know that with more research, we can reveal what puts people at increased risk of SUDEP, understand exactly how these deaths occur, and thereby find ways to prevent them.

In this feature, we outline just some of the research funded by the Epilepsy Research Institute that will one day help to save lives.

Understanding the brain during sleep

One thing we do know about SUDEP is that it frequently occurs during sleep. To better understand what happens in the sleeping brain, Professor Beate Diehl is leading a study using data from MRI scans to investigate how parts of the brain that control the heart and breathing communicate with each other, and how this is affected in people with epilepsy. This could eventually support  healthcare professionals to assess a person’s risk of SUDEP, so they can take measures that could save that person’s life.

Studying how bodily functions are affected in Dravet syndrome

SUDEP is the leading cause of premature death in people with Dravet Syndrome. One possible explanation is dysautonomia – a comorbidity of Dravet Syndrome which causes a disruption in vital bodily functions like heart rate, body temperature and digestion. Supported by a joint fellowship with the Institute and Dravet Syndrome UK, Dr Lisa Clayton will work with people with Dravet syndrome to better understand how dysautonomia affects them and their risk of seizures. She believes  her work could lead to new ways to measure dysautonomia and assess people’s risk of SUDEP so that this risk could be mitigated. June is Dravet Syndrome Awareness month – you can read more about the condition in this blog from Dravet Syndrome UK’s Director, Claire Eldred, and Chair, Galia Wilson.

New ways to measure brain activity

Gaining a better understanding of how the brain controls breathing and heartrate is also the aim of Dr Rob Wykes. He is using highly sensitive technology to investigate a phenomenon called ‘spreading depolarisation’ – a wave that sweeps across the brain during seizures and ‘switches off’ brain activity. Rob hopes to reveal how different parts of the brain are affected, and whether the increased risk of SUDEP could be counteracted.

Studying the role of microglia in SUDEP

Neurones are not the only type of cell in the brain affected by seizures. Microglia – the brain’s immune cells – also have an important role to play in epilepsy. Dr Amol Bhandare is studying how microglia change during the progression of epilepsy, and how this contributes to SUDEP. He will also investigate whether a common antibiotic called minocycline could alter microglia activity and possibly become a treatment to prevent seizures and SUDEP.

Saving lives through research

By continuing to driveinvestment into research projects like the ones above, we believe we can understand SUDEP better, and will one day have the power to stop epilepsy from taking people away from their friends and families.

Find out how your donations are supporting life-saving epilepsy research.