In 2014, the Virginia General Assembly passed House Joint Resolution 98, establishing July 12th to be recognized as Virginia SUDEP Awareness Day. The resolution was agreed upon after Khristin Kyllo, a 19 year old Vienna resident, lost her life to SUDEP (Sudden Unexpected Death in Epilepsy) in 2011. We too know the anguish of losing a child, as our 19 year old son, John Paul, passed away from SUDEP in December 2015. John Paul was one of at least 3,000 SUDEP deaths that occur each year in the U.S.
SUDEP is defined as a sudden, unexpected and non-traumatic (non-drowning-related) death in a person with epilepsy. Occurrences of SUDEP are most frequent between the ages of 20 – 40, and unfortunately, the exact triggers of SUDEP are unknown, and research is slow or non-existent.
Today, nearly 3 million Americans live with epilepsy, and 80,000 of those individuals live here in Virginia. The CDC estimates 1.16 cases of SUDEP for every 1,000 people living with epilepsy and the risk of SUDEP increases to 1 in 150 for those in “higher risk” categories. For sense of scale: more Americans have died from SUDEP in the past 15 years (at least 45,000), than Americans killed in action during the entire Vietnam War (approx. 41,000), a conflict of roughly the same duration.
Equally tragic to the number of young lives lost, is the fact that the majority of treating physicians do not inform their patients about SUDEP, as occurrence is deemed “low risk” and thus it is unnecessary to raise it as a concern to the patient or family. Further, many medical examiners are unaware of SUDEP and have a high probability of underreporting of actual number of SUDEP deaths.
In Virginia, however, we have an opportunity to generate new efforts around SUDEP awareness. Delegate Thomas A. “Tag” Greason (R – Ashburn) will propose legislation this year that addresses some of the current deficiencies surrounding SUDEP and bring to light a more accurate representation of what this silent killer is capable of. Under Del. Greason’s proposed bill, state medical examiners may be exposed to additional education and training on SUDEP and encouraged to inquire about any history of seizures. Furthermore, once a cause of death is determined to be SUDEP, reporting such a case to a national registry (such as the North American SUDEP Registry (NASR)) would be required.
Presently, only three (3) states have passed SUDEP legislation into law – Illinois, New Jersey, and North Carolina. Efforts are underway here in Virginia to enact meaningful laws that would provide state medical examiners with SUDEP education/training and require more accurate reporting on SUDEP deaths to help increase awareness within the medical community. Hopefully, these efforts will help provide the catalyst for increased research, determining diagnoses, and ultimately finding a cure for SUDEP.
As we commemorate Virginia SUDEP Awareness Day this July 12th, we can honor the memory of those young lives lost to SUDEP by increasing public awareness and supporting SUDEP research. Please join us in our quest.
John & Karen Popovich, Potomac Falls
If you would like to learn more about SUDEP, please see the following: