SUDEP & Epilepsy Risks

There are risks associated with epilepsy, so having key, up-to-date information is important to help manage them.

Epilepsy, like other long-term conditions such as Asthma or Diabetes comes with certain risks. If left unchecked these can become very serious and can cause some people to die prematurely; so knowing about them, and  understanding how to reduce them where you can, is important.

Finding out more information about  epilepsy, the risks (such as SUDEP),  managing and talking about it, help to balance risk and help a person to live well with epilepsy.

Unfortunately, a number of people with epilepsy do die each year. 21 people with epilepsy die each week in the UK alone (over 1000 per year), but this number is likely underestimated. Approximately 50% of these deaths are due to, accidents, drowning, Status Epilepticus or suicide. But the other 50% are due to Sudden Unexpected Death in Epilepsy (SUDEP).

But what is SUDEP?

SUDEP is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found.

SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.

The cause of SUDEP is not yet known. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.

Having active seizures puts you at risk of injury and death, and there are certain types of seizure which research has shown increase a person’s risk of SUDEP.

But researchers have identified key risk factors that can increase risk of SUDEP – and we know that for many people there are positive actions which can be taken to reduce these risks. Our Downloads and Get Involved pages have tips on reducing risks.

Research has shown that epilepsy risk factors vary between people with epilepsy, and that the risks they may have can change over time (sometimes quite quickly). So it is important to know about these risks and to review them regularly, so help can be given to reduce them where possible. 

More information about SUDEP and epilepsy risks can be found here.

Take a look at our infographic for key facts and actions you can take to reduce risk: