What is SUDEP? (Sudden Unexpected Death in Epilepsy)
SUDEP is when an otherwise heathy person passes away during or after a seizure, and their death is not caused by drowning, injury, or status epilepticus. In the majority of cases, people pass away while having a seizure in their sleep.
Little is known about SUDEP, and many families are not even informed by their doctors that SUDEP exists.
How common is SUDEP?
It is currently believed that SUDEP kills 1 in 1,000 people with epilepsy each year. However, this number is likely even higher because many SUDEP deaths are not reported.
Who is at risk of SUDEP?
The most common SUDEP risk factors are:
- Tonic clonic (grand mal) seizures
- Uncontrolled seizures
- Having seizures in your sleep
SUDEP can occur in anyone with epilepsy, not just those who suffer from frequent seizures. Actor Cameron Boyce passed away at age 20 from SUDEP despite only having a total of 5 seizures since he was diagnosed with epilepsy 16 years old. All of his seizures occurred in his sleep.
How can I reduce my risk?
The most important thing you can do to prevent SUDEP is prevent breakthrough seizures by making sure you don't miss doses of your medication and you take doses on time.
Experts also recommend the following:
- Avoid seizure triggers
- Get enough sleep
- Seizure detection devices
- Talk to your doctor about changes in your seizures or their frequency
SUDEP Awareness
October is SUDEP Awareness Month.
The Ohio House of Representatives passed legislation to designate October 26th as SUDEP Awareness Day in Ohio.
In 2025, over 20 municipalities across 4 counties in Northeast Ohio came together to pass resolutions to designate the 26th SUDEP Awareness Day. Just a few of these partners include the cities of North Olmsted, Cleveland, Avon Lake, as well as Cuyahoga County.
Get Involved
Do you know someone who passed away due to SUDEP? Help us spread the word about Sudden Unexpected Death in Epilepsy by telling their story. Click the button below to fill out a brief survey about your loved one. If you would like to share other thoughts on SUDEP and the lack of awareness, email us at contact@epilepsyinfo.org