Sudden Unexpected Death in Epilepsy (SUDEP)

Sadly, the risk of SUDEP in Dravet Syndrome is up to 15 times higher than in other epilepsies that start in childhood. SUDEP is responsible for around half of all Dravet-related deaths. But, despite this, people who have the condition have an 85% chance of surviving into adulthood.

Why does SUDEP happen?

The reasons for SUDEP are not clearly understood but it is thought to happen either during, or following a seizure. It is possible that SUDEP is due to a problem with the person’s heart or breathing, during or following the seizure.

How can we reduce the risk of SUDEP?

Families and medical teams need to regularly discuss SUDEP

Medical teams can find it hard to talk about the risk of SUDEP. Sometimes, as several families have told us, SUDEP isn’t discussed at all. But it is really important that it is, so that the family and medical team can work towards finding the best treatment and seizure control plan for the person with Dravet Syndrome.

Parents and carers can make a list of questions to ask their medical team

For example, they can ask:

• What are the risks of SUDEP for my child/adult with Dravet Syndrome?
• What are the options for working together to reduce these risks?
• What can we do to reduce the risks through medication?
• What could we do through diet or other treatment strategies?

Read information about SUDEP

Visit the SUDEP Action website which has a range of helpful resources for families and healthcare professionals. 

Consider using a Sleep-Safe Pillow

The company Sleep-Safe offer discounts on their products for the Dravet Syndrome UK community. Visit their website to read more about their anti-suffocation pillows. The aim of the pillows is to help prevent injury or death, and develop peace of mind for families.

Sleep-Safe pillows should be replaced regularly, especially when they’re not as full as they were when they were new.

Use a seizure monitor

Using a seizure monitoring device can’t prevent SUDEP. But the device can help give families peace of mind by providing an early alert to when seizures are happening.

Different devices are available, including:

• cameras that can monitor the person with Dravet Syndrome from another room
• mattress monitors that alert you to unusual movements
• a monitor that detects changes in heart rate and oxygen levels.

We provide free monitors to support families living with Dravet Syndrome. Find out more about how you could get one through our Seizure Monitor Fund.