K(NO)W SUDEP NOW

Cameron Boyce was a successful actor recognized by millions of fans around the world and a tremendous humanitarian, who made it his mission to use his platform and resources to give back to others in need. On July 6, 2019, Cameron passed away from SUDEP – Sudden Unexpected Death in Epilepsy. He was just 20 years old.

The Cameron Boyce Foundation and the Epilepsy Foundation have joined forces to create K(NO)W SUDEP NOW! – an initiative to bring awareness and to end sudden unexpected death in epilepsy.

Learn more and donate at KnowSUDEPNow.org

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 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.

Orrin Devinsky MD talks about SUDEP (sudden unexpected death in epilepsy). Visit TalkAboutIt.org to watch more celebrity and expert interviews.

What happens?

The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. Over one-third of the time, there is a witnessed seizure or signs of a recent 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 and it may differ between cases. Some researchers think that a seizure causes an irregular heart rhythm. Other research has shown that breathing difficulties following a seizure lead to death.

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Can SUDEP be prevented?

Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. Research has found that people with all types of epilepsy that experience convulsive seizures can be at risk.

For most people living with epilepsy today, the disease can be controlled with available therapies and good seizure-management practices, such as avoiding seizure triggers and 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 epilepsy surgery, neurostimulation devices, dietary therapies, and participating in research to find new, more effective therapies.

Spotlight: Ketogenic Diet and SUDEP

Jeff Buchhalter, MD, PhD, talks about the ketogenic diet as a treatment for seizures and how its use might reduce the risk for SUDEP.

Where can I get more information on SUDEP?

Knowledge is Power

Download our "Knowledge is Power" flyer for help seeking the best care and knowing what questions to ask your health care provider about your SUDEP risk.

Get answers to frequently asked questions about SUDEP.

Learn about the SUDEP Institute

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 sudep@efa.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.

Find Your Local Epilepsy Foundation

Authored By: 
Epilepsy Foundation SUDEP Institute
Authored Date: 
08/2013
Reviewed By: 
Daniel Friedman MD
on: 
Wednesday, November 13, 2019