Sudden Unexpected Death in Epilepsy (SUDEP)
Every year, 1 in 150 people who have uncontrolled seizures dies from SUDEP.1 Accordingly, experts regard SUDEP as the leading epilepsy-related cause of death2; however, in a recent survey of more than 1,000 people with epilepsy and caregivers of people with epilepsy, only 18% of respondents reported having discussed the risk of SUDEP with their doctor.
When people with epilepsy and their caregivers are empowered with information to understand SUDEP, they can take action to reduce risk of harm. To respond to this urgency, raise awareness, and promote steps that can help prevent SUDEP, the Epilepsy Foundation’s SUDEP Institute is issuing this Epilepsy.com Special Report and launching a dedicated #AimForZero hashtag to facilitate greater discussion of SUDEP.
What is SUDEP?
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures.
The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
Can SUDEP be Prevented?
Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures.
For most people living with epilepsy today, the disease can be controlled with available therapies and good seizure-management practices including the support of an epilepsy specialist. And for people with the most severe types of difficult to control epilepsy, there are steps an individual can take to lower one’s risk, including participating in research to find new, more effective therapies.
The 3 million people in the United States living with epilepsy need to know about the potential deadly impact of a single seizure and how they can strive to #AimForZero seizures to reduce their risk of Sudden Unexpected Death in Epilepsy (SUDEP). Click here to learn more.
Information via the Epilepsy Foundation of America.