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Professor Ley Sander talks about the risk of seizures following Cameron Boyce's tragic death

Created:

11 July 2019

There has been much media coverage this week about the tragic death of the young Disney star, Cameron Boyce, following a seizure. We have had many concerned comments and messages about sudden unexpected death in epilepsy. Here our Medical Director Professor Ley Sander talks about what sudden death in epilepsy means and discusses the risks.

Cameron Boyce died in his sleep following a seizure. He was just 20 years old and his family confirmed he was being treated for epilepsy.

We know that Cameron's sad death has raised concerns for many of our supporters and we have had many worried enquiries about sudden unexpected death in epilepsy.

Sudden unexpected death in epilepsy is when someone is believed to have died during or after a seizure, where no other cause of death can be found.

Very rare

I would like to reassure you that this is in fact very rare. There are around 1,000 deaths each year due to epilepsy: 600 of these are thought to be sudden unexpected death in epilepsy. There are 600,000 in the UK with epilepsy, so the risk is actually very low - 1 in a 1,000.

We still do not know how or why sudden death in epilepsy occurs and it is a research priority for us at Epilepsy Society.

We know that there are some situations which can increase the risk for certain people, such as  uncontrolled or poorly controlled seizures; and frequent seizures, particularly convulsive seizures.

Minimising risk

There are, however, measures that you can take to minimise your risk. These include:

  • making sure you take your epilepsy medication regularly and on time
  • keeping a seizure diary to help you notice any change in the pattern of your seizures. These should be discussed with your doctor so that your medication can be changed if necessary
  • ensuring that you get enough sleep, eat regular meals and do not follow a 'party' lifestyle
  • getting a seizure alarm so that if you have a seizure during your sleep, it will alert someone.

Talk to someone

If you are worried, then talking to someone is very important. You could speak to your doctor or epilepsy specialist nurse. Or you could call our dedicated Helpline - our team is always there to listen and their contact details are below.

And remember that you should have a review of your epilepsy with your doctor at least every year.

You can find out more about sudden death in epilepsy here.

And our friends at SUDEP Action have developed an app - EpSMon - to help you monitor your risks in between visits to your healthcare professional. 

Epilepsy Society Helpline 01494 601400 (Mon and Tues 9am-4pm, Wed 9am-7.30pm).