• Sudden Unexpected Death in Epilepsy, or SUDEP, is the leading cause of death in people with uncontrolled epilepsy.
  • While people with epilepsy say they want information on SUDEP, many doctors rarely talk about it.
  • We believe by building awareness and working together, we can help prevent SUDEP.

#DareTo Help Us Prevent SUDEP

#DareTo Discover SUDEP Facts

  • SUDEP is the sudden unexpected death of a person with epilepsy.
  • More than 1 out of 1,000 people with epilepsy die from SUDEP each year.
  • For people with poorly controlled seizures, the risk of dying from SUDEP is much higher: 1 out of 150 each year.
  • SUDEP is less common in children, but it is a leading cause of death in young adults with uncontrolled seizures.
  • The best way to prevent SUDEP is to have as few seizures as possible.

Read our SUDEP FAQs to learn more.

#DareTo Understand SUDEP

No one yet knows the cause of SUDEP. We do know that SUDEP happens most often at night. SUDEP may happen when there are problems with breathing, heartbeat, and brain function after a seizure.

Learn more about SUDEP research.

#DareTo Know the Risk Factors for SUDEP

People with frequent seizures, especially generalized tonic-clonic (grand mal) seizures, are at greatest risk for SUDEP.

Other risk factors may include:

  • Epilepsy beginning in childhood
  • Having epilepsy for a long time
  • Not taking medications regularly or as prescribed
  • Young adult age (20 to 40 years old)
  • Having seizures at night

Learn how you can reduce your risks and view this infographic with facts to keep you safe.

#DareTo Ask about SUDEP 

Talk to your health care team and get answers to these questions:

  • What is my risk of SUDEP?
  • What should I do if I have another seizure?
  • How can I prevent future seizures?
  • Are there other treatment options that can stop my seizures and lower my risk of SUDEP?
  • Should I consider seeing an epilepsy specialist (called an epileptologist) or visiting an epilepsy center to discuss other treatment options?
  • What should I do to reduce the risk of SUDEP if I have seizures at night?
  • Should I consider using a device to warn someone that I am having a seizure?
  • Should I consider sharing a bedroom?

Some other health conditions may increase your risk of dying or getting injured during or after a seizure. We encourage you to see your primary care physician for regular check-ups to help stay healthy.

Get advice on how to talk about SUDEP.

#DareTo Advocate for SUDEP Awareness 

Help the SUDEP Institute prevent SUDEP and bring awareness to this tragic outcome of epilepsy. 

  • Write your doctors to let them know it is important to talk about SUDEP
  • Write your own #DareTo Say SUDEP letter and we will help you share it with our community.
  • Create a video with SUDEP facts and encourage others to have the courage to #DareTo Say SUDEP.
  • Make a donation to the SUDEP Institute to help support important programs aimed at prevent SUDEP and supporting families bereaved by SUDEP.

Epilepsy.com's SUDEP Editor Dr. Daniel Friedman answers the question, "What would you like see in the way of SUDEP education and awareness in the next 12 months?"

 

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#DareTo Say SUDEP Infographic

View and share the #DareTo Say SUDEP infographic with your community. We are optimistic that this will improve both the quality and quantity of conversations about SUDEP.  

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SUDEP Stories

Read the powerful #DareTo Say SUDEP stories from families and learn how you can share your story to help build awareness for SUDEP.