About Sudden Unexpected Death in Epilepsy (SUDEP)
SUDEP stands for Sudden Unexpected Death in Epilepsy. Sadly, it is one, among range of ways in which epilepsy can result in early death. A case of SUDEP applies to the sudden death in someone known to have epilepsy, in the absence of an obvious cause for the death. Although most incidents of SUDEP are presumed to occur after a seizure, a seizure at the time of death is not a requirement for diagnosis of SUDEP.
According to the National Institutes of Health, SUDEP is the most common epilepsy-related cause of death. A discussion with your doctor to determine where you or your loved one fall on the risk spectrum is very important. This video from Dr. Stephan Schuele of Northwestern Medicine gives an overview of what SUDEP is, how to reduce the risks, and the importance of communicating about it.
Risks in Epilepsy
The Danny Did Foundation is committed to serving as a source 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 is an important step in preventing SUDEP. With better understanding in lay and professional communities about the issues surrounding SUDEP, we can (and will) facilitate communication and knowledge that can save lives.
There are a range of risks that accompany 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. Seizures can sometimes be fatal, and no matter how the death is defined, every time it is a huge loss. There are different ways that seizure activity can lead to a death: drowning, an accident, head trauma, suicide, or status epilepticus. Another category of epilepsy mortality is Sudden Unexpected Death in Epilepsy, or SUDEP. SUDEP is just that: sudden and unexpected. That’s how Danny died, and that why we’re here. The Danny Did Foundation pledges to shine a light on SUDEP for as long as is necessary to achieve progress in awareness and 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. A widely accepted definition of SUDEP was proposed by Dr. Lina Nashef : “The sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for 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.
Although there is no proven prevention for SUDEP, researchers, public health officials and advocates in the epilepsy community are working hard to change that. There are meaningful and proactive actions that patients and caregivers can take to reduce the risk of SUDEP. Those strategies include:
- Seeking maximum seizure control via strict treatment adherence;
- Engaging in regular physical activity and lifestyle modifications that reduce stress;
- Patients should regularly visit with their doctor, especially if their convulsive seizures are not completely controlled;
- Consider supervision or monitoring during sleep hours to identify seizure activity;
- Specifically, consider the use of resources such as monitoring devices that can alert caretakers to certain types of seizures and enable early intervention;
- Ensure that family members and caretakers have knowledge of seizure first aid and of emergency resuscitation measures including CPR and defibrillator use;
We also encourage patients and caregivers to inquire about and advocate for research that leads to more answers about the causes of SUDEP, and to advocate for increased SUDEP awareness by the public and the medical community.
An estimated 1 in 26 people will develop epilepsy over the course of a lifetime. All of them should be made aware of the risks that accompany epilepsy, including SUDEP. As is the goal with other diseases and conditions that can be fatal, 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.
Activity related to SUDEP research has gained momentum in recent years; SUDEP has become a more common topic at all levels of meetings among neurologists, epileptologists, and epilepsy organizations. For too long, the standard of non-disclosure around SUDEP has been the tragedy of omission, the tragedy of silence, the tragedy of passivity, one after the next. It is time for change.
Our Danny Did approach to making progress against SUDEP features these elements:
- Train and encourage doctors, nurses and all medical professionals to communicate about SUDEP with epilepsy patients and caregivers. Knowing about the risk is a critical first step.
- Empower epilepsy patients and their loved ones with education and resources to learn about SUDEP, and about ways to minimize the SUDEP risk.
- Partner with Partners Against Mortality in Epilepsy (PAME), the North American SUDEP Registry (NASR) and others to advance collaborative campaigns designed to combat epilepsy mortality.
- Seek out technologies and devices that serve as seizure detection and prediction systems for home use that enable intervention during a seizure; and enable access to these systems through family grants.
- Engage medical students and early career healthcare professionals so they understand the family perspective around the importance of SUDEP disclosure.
- Engage the medical examiner and coroner community to improve tracking around how often epilepsy-related deaths occur, to improve statistics that play role in funding for research.
- To address the need for better tracking of epilepsy deaths, the DDF worked with Illinois State Senator Dan Kotowski to pass the Danny Stanton SUDEP Act, which requires coroners and medical examiners in Illinois to report instances of SUDEP to the North American SUDEP Registry (NASR) at New York University.
Uncontrolled seizures and convulsive seizures at night present two of the greatest risk factors for SUDEP. It is important to talk with your doctor about your individual risk level, with the goal to create a treatment plan for the fewest possible number of seizures. Be sure to read our SUDEP FAQ page for more important information.
Solving the SUDEP riddle will be achieved only when specific risk factors are identified, and the exact mechanisms of death are determined. The Danny Did Foundation is committed to combatting SUDEP in honor of Danny Stanton and every family who has lost a loved one to epilepsy.
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The Danny Did Foundation is a not-for-profit corporation organized in the state of Illinois and recognized by the Internal Revenue Service as a 501©(3) tax-exempt organization. Our Tax ID number is 27-1642251. We hold a Gold Level charity rating from Guidestar.https://www.guidestar.org/