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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)


Epilepsy & SUDEP


A seizure is a sudden behavioral change resulting from excessive electrical activity in the brain. Seizures may be provoked (also known as acute symptomatic; for example, a fever in a young child, drug intoxication or withdrawal, electrolyte imbalance) or unprovoked, resulting from a genetic, developmental, acquired (for example, head trauma, tumor, stroke), or an unknown cause.

When a person has two or more unprovoked seizures, they have epilepsy. An estimated 3.4 million Americans have active epilepsy, with up to 200,000 new cases diagnosed in the United States each year. Approximately 1 in 26 people will develop epilepsy at some point in their lives, and the onset of epilepsy is highest in children and older adults. Among children, epilepsy is the most common brain disorder in the U.S., impacting 470,000 children and adolescents aged 0-17 years.

Worldwide, epilepsy impacts 65 million people across a spectrum of nearly 30 syndromes, sometimes referred to as "the epilepsies". Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience uncontrolled seizures. In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

A 2017 report from the Centers for Disease Control and Prevention (CDC) indicates that the number of Americans with epilepsy is higher than ever. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. According to advocate group Citizens United for Research in Epilepsy, epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.

To view facts and common questions about epilepsy presented by the CDC, click here.


  • What is the exact diagnosis?
  • What is likely causing the seizures?
  • What kinds of tests do we need, and would more frequent testing help?
  • What are the treatment options, and what are some alternative approaches?
  • What side effects can be expected with treatment, and how can they be managed?
  • Should we see an epileptologist?
  • Ask about nocturnal seizures (seizures that occur during sleep).
  • Ask about MRI tests, both with and without contrast.
  • What types of devices exist that can alert a caregiver when seizure activity occurs?
  • Ask the doctor to discuss the risks presented by epilepsy, including SUDEP.
  • What should prompt a call between scheduled visits?


There are several risks that company a diagnosis of epilepsy. Risks related to falls and injuries, swimming, bathing, driving and head trauma are all important to be aware of. A sad reality is that there is also a risk of mortality with epilepsy. Sudden Unexpected Death in Epilepsy, or SUDEP, is one of those mortality risks. A discussion with your doctor to determine where you or your loved one fall on the risk continuum is extremely important. According to the National Institutes of Health, SUDEP is the most common epilepsy-related cause of death.

The DDF’s approach to making progress against SUDEP is multi-pronged:

  • Challenge and encourage doctors, nurses and all medical professionals to communicate about SUDEP with epilepsy patients.
  • Seek out technologies and devices that serve as seizure detection and prediction systems for home use that sound an alarm and alert others when seizure activity occurs.
  • Partner with The SUDEP Institute, Partners Against Mortality in Epilepsy (PAME), the North American SUDEP Registry (NASR) and others to advance collaborative campaigns designed to combat SUDEP.
  • Offer practical information to epilepsy patients and their loved ones on ways to learn about SUDEP and ways to possibly minimize the SUDEP risk.
  • Utilize our Medical Advisory Board to provide the latest news in SUDEP research and SUDEP-related issues.

Click on 'About SUDEP' in the left column to learn more about this unfortunate risk of mortality in epilepsy. Click here to read parent testimonials about SUDEP given before the Institute of Medicine panel ahead of its 2012 Report, called Epilepsy Across the Spectrum.

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Danny Did.