What You Should Know

Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death. Although Sudden Unexpected Death in Epilepsy (SUDEP) is not well understood, it is suspected to sometimes be related to heart rhythm problems during a seizure. SUDEP occurs more often among people with convulsive seizures, especially generalized tonic-clonic seizures that are not well controlled. More research is needed to fully understand what causes SUDEP.

A death is referred to as a "SUDEP" when a seemingly healthy person dies unexpectedly and no reason for death can be found.  The most common criteria used to determine whether a death is due to SUDEP are (Leestma, et al 1997):

• The person had epilepsy, defined as recurrent unprovoked seizures.
• The person died unexpectedly while in a reasonable state of health.
• The death occurred suddenly.
• The death occurred during normal activity, often during sleep and found in or near the bed.
• An obvious medical cause of death could not be determined at autopsy.
• The death was not the direct result of status epilepticus.

While SUDEP can happen to anyone with epilepsy, some people are at higher risk than others. Commonly associated risk factors include:

• Poorly controlled seizures
• Treatment with multiple anticonvulsant drugs
• Having long-standing chronic epilepsy

Other risk factors include:

• Generalized tonic-clonic seizures
• Seizures that happen during sleep
• Not taking anticonvulsant medicines as prescribed
• Stopping the use of anticonvulsant medicine abruptly
• Developmental delays
• Onset of epilepsy at a young age

Download the SUDEP Fact Sheet.

Partners Against Mortality in Epilepsy (PAME) Conference 

This three-day learning event is the first Partners Against Mortality in Epilepsy (PAME) conference devoted predominantly to Sudden Unexpected Death In Epilepsy (SUDEP), where clinical, basic science and patient/family attendees will come together to understand and support each other. This is a joint effort of SUDEP Coalition partners (AES, CDC, CURE, EFA, ETP/FACES, NINDS, SUDEP Aware) and is coordinated by the American Epilepsy Society (AES). The conference will take place June 21-24, 2012, in the Chicago suburb of Evanston, IL. Click here to learn more.

Watch our SUDEP Webinar

epilepsyUSA article

A Brief Visitor with a Lasting Legacy- Katie York (page 15)

The story of one young woman's determination, vision, and strength.