#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 is 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. As reported in the new SUDEP Guideline published by the American Academy of Neurology and American Epilepsy Society, people who have 3 or more generalized tonic-clonic seizures a year have a 15-fold increased risk of SUDEP. 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 get started with reducing their 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 and illicit substances
  4. Strive to stop seizures

These behaviors are a starting point towards better seizure control. People living with epilepsy should talk with their health care team about their risks for seizures and SUDEP, then work together to create a seizure management and lifestyle plan.

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.

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Authored By: 
The Epilepsy Foundation SUDEP Institute
Authored Date: 
11/2017