#AimForZero

How common is SUDEP?

People with epilepsy die prematurely at a higher rate compared to the general population.1 The most common cause of death from epilepsy is sudden unexpected death in epilepsy, known as SUDEP.

There are at least 2,750 cases of SUDEP each year — meaning that almost 1 in 1,000 adults with epilepsy will die as a result of SUDEP every year.2 For those adults with uncontrolled seizures, the risk increases to 1 in 150.3

When is SUDEP likely to occur?

SUDEP almost always associated with generalized tonic-clonic seizures and is less likely after focal (or partial) seizures.

Learn more about types of seizures and their associated risks.

Reducing the Risk of SUDEP

Experts agree it is imperative to reduce the number of generalized tonic-clonic seizures experienced by people with epilepsy.

Having a generalized tonic-clonic seizure increases the risk of SUDEP for a person with epilepsy. This singular fact makes an indisputable case for urgently addressing seizure control.

Uncontrolled seizures can pose a deadly threat for people with epilepsy.

Understanding and Preventing Risk Behaviors

There are a number of situations or behaviors that can increase the risk or likelihood of seizures. To help people with epilepsy reduce risk of seizures and SUDEP, experts have identified four actionable behaviors. This essential "to-do list" includes:

  1. Take medication as prescribed
  2. Get enough sleep
  3. Limit alcohol
  4. Strive to stop seizures

References

1. Smithson WH, Colwell B. Sudden Unexpected Death in Epilepsy: Addressing the Challenges. Curr Neurol Neurosci Rep. 2014 Dec;14(12):502. Available at http://www.ncbi.nlm.nih.gov/pubmed/25300243.

2. Smithson WH, Colwell B. Sudden Unexpected Death in Epilepsy: Addressing the Challenges. Curr Neurol Neurosci Rep. 2014 Dec;14(12):502. Available at http://www.ncbi.nlm.nih.gov/pubmed/25300243.

3. Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-31.

Authored by: The Epilepsy Foundation SUDEP Institute on 9/2016
Real Numbers Show Real Risk

In our recent survey, 1 in 3 respondents reported experiencing one seizure every month in the past year. Only 1 in 4 individuals reported having no seizures in the past year.

Dale Hesdorffer, PhD
Expert Insight

Why is the goal of zero seizures so important?

"Prevention of SUDEP must involve realistic efforts to reduce generalized tonic-clonic seizure frequency in order to avert the occurrence of this devastating epilepsy outcome."

— Dale C. Hesdorffer, PhD, Professor of Epidemiology at Columbia University.