Talking About SUDEP

SUDEP means Sudden Unexpected Death in Epilepsy. Sadly, children with Dravet Syndrome are at a higher risk of SUDEP than children with other types of epilepsy. Despite this they have an 85% chance of surviving into adulthood.

The risk of SUDEP in Dravet Syndrome is up to 15 times higher than other childhood-onset epilepsies. Its the biggest cause of death in Dravet Syndrome, responsible for nearly half of all DS deaths. Sadly, SUDEP tends to occur at a younger age (73% before the age of 11) than in other epilepsies.

The good news is that there are things we can do to help reduce the risks of SUDEP:

In the video below, Jane Hanna, Co-Founder and CEO of SUDEP Action describes what we know about SUDEP in Dravet Syndrome, puts risk factors in context, provides some helpful advice on how to talk about SUDEP with your medical team, and explains how SUDEP Action (https://sudep.org) supports families.

Talking about SUDEP with your medical team:

Discussing SUDEP with your neurologist and medical team is an important step in working towards finding the best treatment and seizure control plan for your Dravet child or adult.

Medical teams can find it hard to talk about the risks of SUDEP. As several families have told us, sometimes SUDEP isn’t discussed at all. Yet most families say they do want an informed discussion about SUDEP. If you have SUDEP concerns, but have never raised these with your medical team, now could be the time to ask.

Before your next appointment, make a list of questions. For example, you might want to ask - What are the risks of SUDEP for my child? What are the options for working together to reduce these risks? What can we do through medication? What could we do through diet or other treatment strategies? What can we do at home?

For more information about SUDEP, including leaflets and downloads that can be shred with healthcare professionals, please visit the SUDEP Action website, which has a range of helpful resources for both families and healthcare professionals.

If you’ve been impacted in anyway by SUDEP, please know specialist and experienced support is available from SUDEP Action. We send our thoughts and love to all who have lost a loved one through SUDEP.

Sleep-Safe Pillows

Sleep-Safe offer discounts on their products for the Dravet Syndrome UK community. Visit their site to read more about their anti-suffocation pillows, which aim to not only help prevent injury or death, but develop peace of mind for families.

Please note that Sleep-Safe pillows should be replaced regularly - it's most important to replace a Sleep-Safe anti-suffocation pillow when it suffers 'loft loss' (i.e. reduced fullness) because that will reduce its anti-suffocation properties and it won't 'work properly'.

Seizure Monitor Fund

Using a seizure monitoring device (e.g. night-time monitoring) may help reduce the risks of SUDEP. Providing free night-time monitors is one of the ways in which we support families living with Dravet Syndrome. Visit the ‘Seizure Monitor Fund’ section of our website for more information.