SUDEP Action

Making every epilepsy death count
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Childhood, Adolescence and Risk

Whether you’re a parent of a child with epilepsy, or a young person with the condition; it can be worrying to think about the risks of epilepsy

But knowing about risks, discussing them with others (clinicians, family, teachers etc), and taking steps to reduce them, can help you navigate living with epilepsy.

Having a long-term condition like epilepsy doesn’t mean you can’t take part in everyday activities, but it does mean you might need to take some extra steps to make sure you keep as safe as possible.



Moving from Paediatric to Adult services?

Developing independence as you get older is important, and living with epilepsy can make it harder to feel like others in your social group. Moving from paediatric (children’s) to adult epilepsy services happens at the same time as many other changes linked to being a young adult.

It is important to know how to balance gaining independence with managing risk, so you can make informed choices to help you stay safer:


Keep an eye on your epilepsy and risks with the free EpSMon app (16 years+)

Childhood Epilepsy and SUDEP

Each year approximately 1 in 1000 people with epilepsy will die suddenly with no obvious cause of death found ). This is called Sudden Unexpected Death in Epilepsy (SUDEP).

Previously it was thought that SUDEP in children was less common than it was for adults (1 in 4500), but research suggests that this number was understimated and that the risk of SUDEP happening to children with epilepsy is actually similar to what it is for adults (1.2 deaths for every 1000 children with epilepsy each year). This risk increases if they have a more complex, rare form of epilepsy for example, Dravet Syndrome and depending on the risk factors each child may have because of their epilepsy. 

This is something you should be aware of and discuss with your clinician who can discuss your child’s individual level of risk (which varies between people with epilepsy).

Further information on SUDEP can also be found here