Experts have long known that epileptics sometimes suddenly and unexpectedly die during or right after a seizure. The cause of this death is often utterly unrelated to injury or other known causes, leaving professionals perplexed. Surprisingly, a lot of caregivers and even patients are left scratching their heads too, as they have never heard of sudden unexpected death in epilepsy (SUDEP).
That's at least according to a study recently published in the journal Epilepsia, which details how nearly a fourth of all caregivers of epileptic patients have never heard of SUDEP. Additionally, a mere 65 percent of all epileptics don't even know there's a chance that it can occur.
And stunningly, it occurs a lot more often than you think. While most epilepsy-related deaths are from drowning or injuries sustained during the seizure, one in every 1,000 epileptics die from SUDEP each year.
According to the US Centers for Disease Control and Prevention (CDC), epilepsy affects about 2.3 million adults and nearly 470,000 children in the United States alone. That means that 2,770 US citizens could be lost to SUDEP each year, and a great many of them may have not even known it was possible.
The authors of the latest study, which was based on a survey of 1,400 sample patients and 600 caregivers, argue that patients should be made far more aware of SUDEP, even if little can be done in terms of preventive action.
"When someone with epilepsy dies suddenly we want to understand why," Barbara Kroner, an epidemiologist with RTI International, explained in a statement. "Our research calls attention to SUDEP and provides important knowledge to help neurologists have open discussions with patients, especially those at greatest risk of epilepsy-related death."
Some may argue that telling patients about SUDEP would simply be adding more stress and worry to their lives. And that's not necessarily wrong.
A follow-up of the surveys revealed that elevated fear, anxiety, and sadness were often reported by epilepsy patients and caregivers upon first learning about SUDEP. However, the same study also showed that these feelings gave way to a desire to learn more and take more initiative to manage their epilepsy.
"Preventing seizures in patients with difficult to treat epilepsy may help avert sudden death," Kroner concluded. "It's important for the neurological community to continue to focus our attention on SUDEP, determining which epilepsy patients are at greatest risk and how best to educate them and their caregivers."
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