(CNN) — Twenty-year-old Disney Channel star Cameron Boyce died from a fatal seizure, according to his family. While the Los Angeles County Department of Medical Examiner-Coroner has yet to determine Boyce’s official cause of death, the tragedy has shined a light on a rare but devastating reality: Each year, about 1 in 1,000 people with epilepsy suddenly die.
Most of these deaths occur during or after seizures, which can cause people to stop breathing and can trigger dangerous irregular heart rhythms. An estimated 3.4 million Americans have epilepsy, according to the US Centers for Disease Control and Prevention, and those with uncontrolled seizures are at higher risk for unexpected death.
“What appears to happen most of the time is people just stop breathing at the end of the seizure, and they never start breathing again,” said Dr. Jacqueline French, chief medical officer at the Epilepsy Foundation and a professor of neurology at NYU Langone Health. “Their respiratory drive just goes away and never comes back.”
Doctors call the phenomenon “sudden unexpected death in epilepsy,” or SUDEP. The condition “actually takes more lives every year than sudden infant death syndrome does,” said French, “but obviously it doesn’t get the same press.”
‘It was our responsibility and duty to talk about it’
The term doesn’t include deaths related to external causes, such as drowning or crashing a car during a seizure. Only recently have doctors begun to truly understand the phenomenon, French said, and more doctors discuss the risk with patients now than in years past.
“More than a decade ago, we didn’t talk about SUDEP in epilepsy a lot because it scared people, or doctors were worried that people would get overly scared, particularly because at that time there wasn’t that much you could do about it,” French said.
“But we realized over the past 10 years that it was our responsibility and duty to talk about it with people who have epilepsy. First, because the families need to know, and second, because there are things people with epilepsy can do to reduce their risk.”
Because the deaths are often connected to seizures, the most important thing patients can do to reduce their risk is take seizure medication as prescribed, according to the CDC.
Pill cases and trackers can help patients with their medication, French said, but she acknowledged that adherence can be challenging, especially for young people who are living independently. “Obviously, the desire of every parent is to see their child be independent,” she said. “But when they have a medical condition, there’s always a fear that independence may have a risk.”
Reducing the risk of death
The CDC also recommends that people with epilepsy avoid known seizure triggers, avoid drinking too much alcohol and get enough sleep. But doctors shouldn’t be content with just reducing the number of seizures, French said.
“Fabulous control is no seizures,” she said, “and doctors should be seeking no seizures. If patients are going to a place where there’s no specialized care for epilepsy, then they should consider seeking out specialized care.”
More research into medications that treat the root cause of epilepsy, and not just the symptomatic seizures, could reduce the number of SUDEP cases, French said. And while patients can take steps today to reduce their risk, the sudden deaths remain a devastating reality.
The deaths can be particularly painful because many who die appear otherwise healthy.
“Every person who takes care of epilepsy patients has seen this happen,” French said. “It’s devastating for us physicians as well.”