Philip Gattone
President and CEO, Epilepsy Foundation

Warren Lammert
Chair of the Board of Directors, Epilepsy Foundation

Have you thought about the meaning of our header “Epilepsy Matters”? EPILEPSY MATTERS! It makes a difference. This is most certainly true when we consider a disturbing report recently released by the Centers for Disease Control and Prevention (CDC). They reported statistics on death in children with epilepsy. Using data from the National Child Death Review Case Reporting System (NCDR CRS), the authors stated that children with epilepsy were five to ten times more likely to die than children without epilepsy. These deaths occurred more often in males (63%). Further, natural deaths were significantly higher and accidental deaths significantly lower than those without epilepsy. For example, children with epilepsy were more likely to die of medical conditions such as pneumonia, congenital anomalies, and other medical conditions than those without epilepsy [1].

It is the Epilepsy Foundation’s mission to end seizures and SUDEP and to improve the lives of those living with epilepsy and their families. To accomplish this we have increased our funding for research to identify underlying causes of death, including the cause(s) of SUDEP. Taking this stand in research on SUDEP, the Epilepsy Foundation is also working to increase public and medical awareness. However, the CDC report raises further questions about death in epilepsy. As mentioned, comorbidities are a significant factor in epilepsy. Children with epilepsy often have other problems as well, putting them at higher risk both because of seizure frequency and other issues. For example, deaths were also due to illnesses that are not commonly associated with epilepsy but that may be related to a comorbid condition.

At the Epilepsy Foundation, we are committed to making a difference for these children and their families. For example, through our New Therapies projects and our “Shark Tank” we have supported monitors that alert others of seizures with the hope of keeping people, including children, safe during and after a seizure. Most recently released is the SAMi monitor, which shows great promise. We are also committing resources to studying the potential of medicines tailored to each individual based on their genetic profile. While these studies are very early in their development, they are targeting our most vulnerable populations. Finally, we are devoting significant resources to building a Rare Epilepsy Data Base that will help to identify and study the most vulnerable populations of patients, especially children, who suffer not only unusual epilepsy syndromes but also comorbid conditions and are at a higher risk of dying.

We are not afraid to talk about death at the Epilepsy Foundation because until we recognize both SUDEP and other causes of death related to epilepsy and discuss them, we cannot combat them. We want to thank our friends and partners at the CDC for addressing important topics like these that shed light on work still to be done. Please join our fight. Dare to talk about SUDEP in your practices, with patients and colleagues. Dare to diagnose and acknowledge significant comorbid conditions. Dare to be involved with research to improve lives. And dare to support the Epilepsy Foundation in our important work. Please visit our SUDEP website. http://www.epilepsy.com/sudep-institute

References

  1. Niu Tian, Esther C. Shaw, Matthew Zack, Rosemarie Kobau, Heather Dykstra, Theresa M. Covington. Cause-specific mortality among children and young adults with epilepsy: Results from the U.S. National Child Death Review Case Reporting System. Epilepsy Behav. 2015; 45:31-34.

In Epilepsy & Behavior; May 2015; 46: 1.

Reprinted with permission from Epilepsy & Behavior, Elsevier for Editorials.