Sudden Unexpected Death in Epilepsy (SUDEP) is just that: sudden and unexpected. That’s how Danny died, and that’s why we’re here. SUDEP is the most common cause of death in epilepsy. The Danny Did Foundation pledges to shine a light on SUDEP for as long as is necessary to achieve major progress in awareness and in the advancement of preventative measures.

A death is referred to as SUDEP when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are:

• The person has epilepsy, which is defined as recurrent unprovoked seizures.

• The person died unexpectedly while in a reasonable state of health.

• The death occurred suddenly and during normal activity (often during sleep).

• An obvious medical cause of death could not be determined at autopsy.

• The death was not the direct result of status epilepticus.

Activity related to SUDEP research has gained momentum in recent years; SUDEP has become a hot topic at all levels of meetings among neurologists, epileptologists, and epilepsy organizations. This momentum is very, very necessary as it seems that an entire generation has passed during which little progress has been made in understanding —let alone in solving— this medical conundrum. For too long, SUDEP has been the tragedy of omission, the tragedy of silence, the tragedy of passivity, one after the next. The time for change is now.

Seizures can sometimes be fatal from a range of causes. While each of these deaths is not a SUDEP – other deaths could be caused by status epilepticus (prolonged seizures), head trama, drownings or other accidents – every one is a huge loss, and as is the goal with other deadly afflictions, SUDEP must be attacked, dissected, understood, and conquered. This requires increased funding for research and the brightest minds in medicine and technology leading this research. Due to a lack of large-scale, population-based studies and since SUDEP often goes unrecognized by physicians and medical examiners, the incidence of SUDEP is probably underestimated.

There is no known cure-all way to prevent SUDEP. Currently, the best course of treatment is to encourage and engage in these preventative strategies:

  • advocate for increased awareness by the public and the medical community;
  • maximum seizure control via strict treatment adherence;
  • regular physical activity and lifestyle modifications that reduce stress and seizure activity;
  • patients should regularly visit with their doctor especially if their convulsive seizures are not completely controlled;
  • consider the use of alternative resources such as monitoring devices that detect certain seizures and can alert caretakers and enable early intervention;
  • consider supervision or monitoring during sleep hours to identify seizure activity;
  • ensure that family members and caretakers have knowledge of seizure first aid and of emergency resuscitation measures including CPR and defibrillator use;
  • inquire about and advocate for research that enables a better understanding of the mechanisms of SUDEP.

Uncontrolled or refractory epilepsy (seizures that resist drug treatment) and habitual tonic clonic seizures at night present two of the greatest risks for SUDEP. It is important to talk with you doctor about your individual risk level.

The Danny Did Foundation is committed to serving as a reservoir of information concerning ongoing SUDEP studies and advancements in technologies that may play a role in helping to prevent SUDEP.  We believe that educating patients and people who live with epilepsy patients may help prevent SUDEP. By better understanding the issues surrounding SUDEP education in lay and professional communities, we can facilitate the dissemination of knowledge that may help to achieve reductions in SUDEP.

The DDF’s approach is multi-pronged:

  • Challenge and encourage doctors, nurses and all medical professionals to address 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.
  • Offer practical information to epilepsy patients and their loved ones on ways to learn about SUDEP and ways to possibly prevent SUDEP.
  • Utilize our Medical Advisory Board to provide the latest news in SUDEP research and SUDEP-related issues.

Solving the SUDEP riddle will be achieved only when specific risk factors are identified and the exact mechanisms of death are determined. As even people with infrequent seizures are at risk to succumb to SUDEP, the work of preventing SUDEP by way of finding precise preventative measures that can be prescribed for epilepsy patients is work of extreme importance. The Danny Did Foundation is committed to this work.

Much has been written about SUDEP. What follows is a selection of discourses we believe to be extremely informative if for no other reason than they each wind around to a similar conclusion: SUDEP awareness is a positive development and a critical first step in assisting families and caregivers of those with seizure disorders.

Click here to read parent testimonials about SUDEP given before the Institute of Medicine panel ahead of its 2012 Report, Epilepsy Across the Spectrum.

Please read more here for further information and facts about SUDEP.

Research Opportunities

If you would like to learn more about the North American SUDEP Registry Project ongoing at the New York University School of Medicine, click here. Its goal is to encourage accurate recognition and reporting of SUDEP-related deaths, and to provide researchers with a body of data that will result in a greater understanding of SUDEP, its causes, and possible means of reducing patient risk. The contact for this project is Dr. Orrin Devinsky at 646-558-0801, or by email at od4@nyu.edu.

To inquire about the Stop SUDEP Research Program ongoing at the Department of Neurology at Baylor College of Medicine, send an email to STOPSUDEP@bcm.edu. This project has three components: (1) SUDEP case repository, (2) brain and postmortem tissue banking, and (3) molecular research on SUDEP mechanisms and risk factors. If you would like to learn more about this study, you can call Dr. Alica Goldman at 713-798-0980.

Human Epilepsy Research Opportunities (HERO): Learn about the value of clinical trials and find clinical trials that could benefit you or a loved one at www.epilepsyhero.org.

If you would like to learn about additional research opportunities specific to SUDEP, click here.