Epilepsy in America affects more than 3 million people. It is as common as breast cancer and takes as many lives – up to 50,000 Americans die each year from seizures and related causes. The risk of sudden death is 24 times greater than that of the general population.

Approximately 1 in 26 people in America will develop epilepsy at some point in their lives. It’s extremely important to begin by saying that most people who have epilepsy are able to live full and healthy lives. However, people with epilepsy or with a loved one who has epilepsy should be aware that epilepsy also presents a number of potentially serious health risks. Most of these risks can be managed but some of them can be fatal. 

According to the National Institutes of Health, Sudden Unexpected Death in Epilepsy (SUDEP) is the most common epilepsy-related cause of death. SUDEP is a mysterious, seldom talked about fatal complication of epilepsy. Patients and their families are often unaware of SUDEP because it is difficult for doctors to discuss and frightening for patients and families to hear.

A widely accepted definition of SUDEP was proposed by Nashef in 1997: “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy, with or without evidence of a seizure, excluding status epilepticus, and in whom post mortem examination does not reveal a structural or toxicological cause for the death”.  For this reason, anytime someone with epilepsy who has no other known health problems suddenly dies, it should raise a SUDEP flag for loved ones.

The incidence of SUDEP is difficult to determine. Statistics about causes of death are most often obtained from diagnoses that are written on death certificates by treating physicians. Many physicians do not list SUDEP as a cause of death but rather use “epilepsy” or “seizure disorder”. The problem is further complicated by the fact that SUDEP can only be confirmed by autopsy and an autopsy is not usually performed unless requested by the physician or family. 

SUDEP has been described as far back as 150 years but for most of that time has remained a great mystery. Over the past decade, much has been learned about SUDEP including the ability to identify risk factors and ways to reduce those risks. The exact cause of SUDEP has not yet been found. One thing is for certain—we’re getting closer and closer to unraveling the mystery and support for continued research is critical.