What is SUDEP?

SUDEP is the Sudden Unexpected Death in someone with Epilepsy where a person is in seemingly good health and no other cause of death can be found on autopsy. It doesn’t refer to a specific disease or condition, but rather a category of unexplained death.

Each year more than 1 out of 1,000 people with epilepsy die from SUDEP, and it is the leading cause of death in young adults with uncontrolled seizures. In fact, SUDEP accounts for more deaths per year in the Unites States than Sudden Infant Death Syndrome (SIDs), yet most people have never heard of it. Current statistics on deaths caused by SUDEP are also likely an underestimate due to lack of awareness among physicians and medical examiners.

The causes of SUDEP are not entirely known, although many researchers believe it is the result of impaired breathing or an irregular heartbeat due to a seizure. SUDEP most often occurs to young adults while the person is sleeping, and the person is often found lying face down. Approximately one third of SUDEP deaths show evidence of a seizure close to the time of death.

While the cause of SUDEP is unknown, researchers agree that the best way to prevent SUDEP is maximizing seizure control. For better seizure control, those with epilepsy should see their healthcare providers regularly and take their medication as prescribed. Since the risk for SUDEP is higher in individuals with uncontrolled seizures, taking steps to reduce the occurrence of seizures is the best way to lessen the risk of SUDEP.