Seizures can sometimes be fatal from a range of causes, and no matter how the death is defined, every time it is a huge loss. There are numerous ways that a person can die stemming from seizure activity – drowning, an accident, head trauma, suicide, or status epilepticus. Another category of epilepsy mortality is Sudden Unexpected Death in Epilepsy, or SUDEP. SUDEP is the most common category of death in epilepsy. SUDEP is just that: sudden and unexpected. That’s how Danny died, and that’s why we’re here. 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.
WHAT DEFINES A CASE OF SUDEP?
SUDEP is not a cause of death but rather a category of death. 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.
WHY IS AWARENESS IMPORTANT?
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. This momentum is 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.
An estimated 1 in 26 people will develop epilepsy over the course of a lifetime. All of them should be aware of the risks that accompany epilepsy, including SUDEP. 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.
HOW MANY PEOPLE DOES SUDEP IMPACT?
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. Commonly accepted figures estimate that 1 in 1,000 people with epilepsy - both kids and adults - will die suddenly each year. That estimate increases to 1 in 150 for people whose epilepsy is not controlled by medication or another form of treatment (known as refractory epilepsy).
The address the need for better tracking of epilepsy deaths, the DDF worked with Illinois State Senator Dan Kotowski to steer passage of 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. It is only the second law of its kind in the United States, and became effective January 1, 2014.
Click here for answers to common questions about SUDEP from The SUDEP Institute, a collaboration of epilepsy advocates of which Danny Did is a member organization.
FOR MEDICAL PROFESSIONALS: AAN/AES SUDEP GUIDELINE
Medical professionals play the most important role in communicating risks for mortality in epilepsy - including SUDEP - with patients and caretakers. In 2017, the American Academy of Neurology and the American Epilepsy Society jointly issued their first practice guideline on SUDEP, which recommends discussing the risk of SUDEP with all people with epilepsy.
At this page on Epilepsy.com, Dr. Dan Friedman gives a summary of the guideline and its key recommendations, including this: "SUDEP should be discussed with patients with epilepsy and their caregivers and they should be informed of their risks."
We urge all medical professionals to utilize this guideline to instigate an honest and ongoing dialogue with patients and parents about the risks that accompany epilepsy. We believe this communication will strengthen your relationship with patients, and lead to better outcomes.