Epilepsy is not a public health priority, yet it takes more lives than sudden infant death syndrome (SIDS) or fires, according to an article reviewing the topic. Doctors say epilepsy deaths should be a focus of research and education to understand and prevent those deaths, according to the "Views and Reviews" article published in the December 16, 2015, online issue of Neurology®, the medical journal of the American Academy of Neurology.
"We have done far too little for far too long," said author Orrin Devinsky, MD, with the New York University Langone Comprehensive Epilepsy Center in New York and a Fellow with the American Academy of Neurology. "Efforts to assess and prevent epilepsy-related death have been distressingly inadequate."
The review states that seizures cause most of the more than 5,000 epilepsy-related deaths per year from incidents such as drowning, car and bicycle accidents, pneumonia from aspiration, alcohol withdrawal, falls, burns, suicide and sudden unexpected death in epilepsy. Yet epilepsy or seizures often do not appear as the cause of death on death certificates and as a result, are underestimated, the review suggests. It also reports that the incidence and prevalence of epilepsy rises in those over the age of 65 and can result in sudden death, however, autopsies for cause of death are infrequently performed for this age group, and when they are, even if there is evidence of a recent seizure, the death is classified as cardiovascular - leading to considerable underreporting.
"We need lawmakers, people who have had a seizure and caregivers for people who have had a seizure to know that seizures are a serious, under recognized, preventable public health threat," Devinsky said. "One seizure is one too many."
Devinsky also says lost years of life due to epilepsy may exceed more than any other brain disorder.
The summary reports there are more than 2,750 cases of sudden unexpected death due to epilepsy in the US per year and people with epilepsy have a 27 times higher risk of sudden death than those without the disorder.
In addition, the review states that minorities and the poor may face a higher risk of developing epilepsy and greater chances of dying from epilepsy than other groups. Very little has been done to address these disparities, in contrast to other neurological disorders such as stroke, states the report.
Devinsky suggests that education about the disorder is key for people who have experienced a seizure and their caregivers. "Controlling seizures saves lives."
"Unlike other disorders where skipping a dose of medication once in a while doesn't affect how well the medication works, with epilepsy, skipping even a single dose can result in a seizure," Devinsky said. "Yet few studies have looked at how we can help people remember to take their medicines."