SUDEP (Sudden Unexpected Death in Epilepsy)
What is SUDEP?
Sudden Unexpected Death in Epilepsy (SUDEP) is a non-accidental death in a person with epilepsy, who was otherwise in a usual state of health.On autopsy, no other of cause of death can be found. The death should not be due to status epilepticus, which is a prolonged life-threatening seizure episode.
How common is SUDEP?
The rate of SUDEP is approximately one death per 1,000 people with epilepsy per year.However, in people with frequent epileptic seizures that are poorly controlled with medications, the rate is approximately 1 in 150 per year.Furthermore, SUDEP is the leading cause of death in young people with uncontrolled epilepsy.People with only absence or myoclonic seizures are not known to have increased risk for sudden death.
What causes SUDEP?
The greatest risk factor for SUDEP is frequent seizures, especially generalized tonic-clonic (grand mal) seizures.
Other risk factors being investigated include:
Some studies have shown that greater number of seizure medications is associated with a higher risk for SUDEP. However, taking multiple medications often indicates severe epilepsy requiring more aggressive treatment. Studies that have taken seizure frequency into account have not found an increased risk of SUDEP attributed to a multi-drug regimen alone.
Is my child at risk for SUDEP?
As with adults, the answer depends on how severe the epilepsy is. However, the risks are in general much lower in children than in adults.
How can I reduce my risk?
There is often but not always evidence of a seizure before death. Whereas a seizure is not a requirement for SUDEP diagnosis, recent studies suggest most SUDEP are likely seizure-related.
Is SUDEP genetic?
There are some studies that suggest genetic factors may play a role, but no definite information is available at this time. Several research efforts are looking into genetics and SUDEP.
Should I talk to my doctor about SUDEP?
Can anti-suffocation pillows prevent SUDEP?
There are no data to support the use of these pillows. However, you may wish to discuss any possible benefits with your doctor.
Do audio and video monitoring devices or co-sleeping help prevent SUDEP?
Nocturnal supervision, especially from someone who is able to provide assistance, such as repositioning or basic first aid after a seizure, may be a strategy to limit SUDEP. However this is often not practical or desired, and more scientific evidence is needed to prove that it is effective in preventing SUDEP.Several devices are being developed to detect seizures and alert caregivers about seizure occurrence.However, they may not alert you that your loved one has stopped breathing.Whether these devices can prevent SUDEP remains unknown.
If I have lost a loved one to SUDEP, can I participate in research?
If you have recently lost a loved one to SUDEP, contact the North American SUDEP Registry (NASR) and participate in their study to help discover the causes of SUDEP.The multicenter NASR provides clinical data, DNA and brain tissue for the scientific community to study.For more information call855-432-8555 or email email@example.com; or contact Dr. Devinsky at 646-558-0801 or email firstname.lastname@example.org.
The Ion Channels in Epilepsy study at Baylor College of Medicine is also accepting participants. The aim of the study is to identify genetic risk factors that predispose persons to epilepsy and to sudden death. If you would like to learn more about this study, or participate, please call Dr. Goldman at 713-798-0980 or email email@example.com.
Where can I get support if I have lost a loved one to SUDEP?
Contact your local Epilepsy Foundation affiliate or any of the organizations with websites listed below.
Where can I get more information?
Devinsky, O Sudden, Unexpected Death in Epilepsy, New England Journal of Medicine, 2011; 365:1801-1811.
Friedman D, Hirsh L Sudden Unexpected Death in Epilepsy – An Overview of Current Understanding and Future Perspectives.European Neurological Review, 2012;7(1):67-71.
Hesdorffer, D., T. Tomson, et al. (2011). "Combined analysis of risk factors for SUDEP." Epilepsia 52: 1150-1159.
Leestma JE, Annegers JF, Brodie MJ, et al. Sudden unexplained death in epilepsy: observations from a large clinical development program. Epilepsia 1997; 38: 47-55.
Nashef L, Sudden unexpected death in epilepsy; terminology and definitions, Epilepsia, 1997;38(11 Suppl.):S6-8.
Torbjörn T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. The Lancet, 2008, Volume 7: 1021-1031.
Surges R, Thijs R, Tan H, Sander J. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. www.nature.com/neurology September 2009, Volume 5: 492-504.
Partners Against Mortality in Epilepsy (PAME) Conference
Partners Against Mortality in Epilepsy (PAME) conference is a three-day learning event devoted predominantly to Sudden Unexpected Death In Epilepsy (SUDEP), where clinical, basic science and patient/family attendees will come together to understand and support each other. The first conference in 2012 was a huge success and plans are underway for the second conference June 19-22, 2014 In Minneapolis, MN.
Click here to learn more and view sessions from the 2012 conference.
A Brief Visitor with a Lasting Legacy- Katie York (page 15)
The story of one young woman's determination, vision, and strength.