Abstract

We appreciate the constructive comments by Dr. Giannouli in response to our article on the underestimation of sudden unexpected death in epilepsy (SUDEP).1 We agree that patients with epilepsy, parents of children with epilepsy, and caretakers of disabled adults with epilepsy should be educated about the risk factors for SUDEP. We also agree that there is a need for more systematic surveillance of SUDEP through collaborative efforts of medical examiners, coroners, and neurologists. However, the medical examiner systems in the United States, and many other countries, are understaffed to accomplish the systematic review of cases that we were able to accomplish with the support of NIH funding. It is essential that all who experience sudden death be evaluated for a history of seizures by interviewing family members and others and reviewing medical records. However, many victims of SUDEP come from lower socioeconomic groups with limited access to neurologic care, newer medications, and epilepsy surgery. We have a long way to go on many fronts to understand and prevent SUDEP.

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