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Talking about SUDEP

People with epilepsy should be given balanced and accurate information about SUDEP – sudden unexpected death in epilepsy – says Epilepsy Society’s medical director Professor Ley Sander.

Speaking on the opening day of the 31st International Epilepsy Congress, he said that with so many people accessing information via Google,  it is now imperative that a healthcare professional should discuss individual risks around SUDEP, so that the information can be put into context.

‘SUDEP has always been an issue but with so many people looking up “Dr Google” and finding out about SUDEP themselves, it is important that as a healthcare profession, we address the issues in a sensitive and timely manner,' he said.

‘More and more people are coming to clinic and starting the conversation themselves and this is a good opportunity to explain both about the rarity of SUDEP and also the importance of minimising individual risks.’ 

There are 600,000 people in the UK with epilepsy and 600 die from SUDEP each year, making the risk 1 in 1000.

Professor Sander also stressed that SUDEP was not the only risk of premature mortality in epilepsy. He said that where a person’s epilepsy was caused by an underlying illness such as a brain tumour or cardiovascular disease, their risk of premature mortality could increase.

‘We need to better understand the interaction of these co-morbidities that are driving the rate of premature death. We also need to identify structural and genetic biomarkers that will alert us that an individual is at a greater risk of SUDEP.’

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