SUDEP Action

Making every epilepsy death count
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Epilepsy Related Deaths

Unfortunately, a number of people with epilepsy do die each year

There are over 1000 epilepsy- related deaths each year in the UK – but this figure is likely to be underestimated. Approximately 50% of these deaths are due to:

  • accidents
  • drowning
  • Status Epilepticus
  • suicide

The other half are due to Sudden Unexpected Death in Epilepsy (SUDEP).

It can be scary to think about the risk of death related to a long-term health condition, however by knowing the risk exists, you can take positive actions to keep yourself or your family member as safe as possible.

Research has shown that many epilepsy deaths are known to be potentially avoidable – which shows there is much that people with epilepsy, their clinicians and their families can do to reduce risks.

That’s why we believe in giving people as much information as possible about what the risks are, so they can make informed choices about their epilepsy, and why we provide free information and tools to help them tackle risk.

 

Key risk factors for epilepsy related deaths:

The risk factors below have been shown in research to increase the chance of death in people with epilepsy (SUDEP and other causes). Many of these risk factors can change over time, or can be changed to improve seizure control and reduce risks:

  • Active seizures
  • Generalised tonic-clonic Seizures (the more frequent these seizures, the higher the risk)
  • Nocturnal seizures (seizures at night) and lack of night-time monitoring / someone there to help if you have a seizure
  • Not taking your medication as prescribed, or medication changes
  • Alcohol or substance abuse
  • Depression or psychiatric illness
  • Pregnancy
  • Intellectual (Learning) Disability
  • Infrequent epilepsy reviews and engagement with an epilepsy clinician 
     

Research has shown the factors below are also linked to SUDEP:

  • Having had epilepsy for over 15 years
  • Epilepsy starting before the age of 16
  • Male gender
  • Younger adult age
     

Click here to see our UK specific stats about Epilepsy-related Deaths [button]

Find out more about what steps can be taken to help reduce risk.

I have lost someone to Epilepsy - see our information section for anyone who has been bereaved by epilepsy. We support people who have been bereaved by ANY type of epilepsy death.