The American Academy of Neurology (AAN) and American Epilepsy Society (AES) recently issued new SUDEP guidelines for medical professionals. Several epilepsy advocacy organizations, including the Epilepsy Foundation, have come together to share their hope that these recommendations lead to increased disclosure rates and better standards of care. Collectively, we also believe more needs to be done to advance our understanding of SUDEP and its prevention.
People who continue to have seizures are at greater risk of a number of complications, which is why preventing seizures and other problems is so important. The most serious complications are injuries and dying from seizures. This section gives frank information about one of the more common causes of dying from seizures called “Sudden Unexpected Death in Epilepsy,” which is abbreviated 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, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. This is the leading cause of death in people 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.
- Learn how to get the best care and decrease your risk for SUDEP.
- Check out the #AimForZero Special Report that identifies four key actions to help reduce your risk of seizures.
Where can I get more information on SUDEP?
- Read these Frequently Asked Questions
- Talk to the physician or other health care professional treating your seizures about SUDEP.
- Get SUDEP Brochures and Materials.
- Download or watch the SUDEP presentations and webinars.
- Read the latest in SUDEP News.
- Learn about current SUDEP Research efforts.
What can I do if I have lost a loved one to SUDEP?
Please read our page on support for bereaved families. You will be able to learn about the programs and services available for families who have lost a loved one to SUDEP. In the meantime, please email firstname.lastname@example.org or call 1-800-332-1000, and press option 1 to speak with an Information Specialist.
What is the Epilepsy Foundation doing to prevent SUDEP?
To ensure that SUDEP gets the public awareness and research attention it deserves, the Epilepsy Foundation has launched the SUDEP Institute. Learn more about the SUDEP Institute.