What is SUDEP?

Sudden Unexpected Death in Epilepsy (SUDEP) is the most common cause of death in people with epilepsy or other seizure disorders. It is estimated that 1 in 10 people will have a seizure at some point during their life. One in 26 people — nearly 1.3 million Americans — will develop epilepsy in their lifetime. Any type of seizure can cause SUDEP; however, it is most common after tonic clonic (grand mal) seizures. SUDEP takes approximately 3,000 lives per year in the United States, yet most medical providers and patients with seizures are not aware of it. Some have referred to this lack of awareness as “The SUDEP Secret.”

The risk of SUDEP in someone diagnosed with epilepsy is 1 in 1,000. However, because most SUDEP cases occur overnight during sleep and without any witnesses, the actual incidence is likely underestimated. Whenever autopsy results come back negative, after any unexpected death, SUDEP should be suspected — even in people with no known history of seizure disorders.

What are the risk factors for SUDEP?

  • Having tonic clonic seizures:

    • Seizures that typically last 1 to 3 minutes and include a tonic phase (stiffening of the muscles) and a clonic phase (rhythmic jerking of the limbs)

  • Having bedtime seizures

  • Being biologically male

  • Prone sleeping (sleeping on one’s stomach)

  • Sleeping alone

  • Onset of seizure disorder at a young age

  • Not taking medication as prescribed

What can be done to prevent SUDEP?

  • Be aware that SUDEP is a risk. Awareness and education are key! 

    • Celebrities such as Florence Griffith Joyner and Cameron Boyce have died of SUDEP, yet most people have never heard of SUDEP. Many medical professionals are also not informed about SUDEP, as it is not often taught in medical school or other health provider training programs.

  • Never let anyone with the possibility of a nighttime seizure be unsupervised. 

    • If you live with someone who has a history of seizures, it is important to complete Seizure First Aid as well as CPR or Basic Life Support (BLS) training.

    • If possible, sleep in the same bed or room as your loved one with a risk of SUDEP.

    • Using motion detection monitors and wearable monitors may alert patients and loved ones about an imminent seizure, thus reducing the risk of SUDEP. 

  • Take preventative measures even if someone has only had one seizure.

    • It is important for those who are newly diagnosed with epilepsy or a seizure disorder to be monitored just as closely as someone who has a long history of seizures.

What can you do to help?

  • Inform your friends and family members about SUDEP. The more people with knowledge about SUDEP, the more it can be prevented.

  • Donate to The Mark Shaparin Foundation to help increase SUDEP awareness and education. 

  • Help plan an event or organize a fundraiser. 

  • Email us for more ways to get involved.

The information on this website is not medical advice. Please talk to your doctor about any health concerns you or a loved one may be experiencing.