Disney Channel star Cameron Boyce, who lived with epilepsy, went to bed on July 5 and never woke up.
"Cameron's tragic passing was due to a seizure as a result of an ongoing medical condition, and that condition was epilepsy," a family spokesperson shared. The “Descendants” actor was 20 years old.
According to Dr. Julia Henry, a neurologist at the University of Chicago Medicine Comer Children’s Hospital, sometimes a person with epilepsy dies unexpectedly in their sleep from a seizure. The phenomenon is known as SUDEP, or sudden unexplained death in epilepsy.
“It’s somewhat similar to SIDS in infants, where they aren’t sick with anything else at the time,” Henry told TODAY. Each year, more than one in 1,000 people with epilepsy die from SUDEP. Individuals who miss doses of medication, are sleep deprived or suffer from tonic-clonic seizures — the type that cause convulsions — are most at risk.
Along with avoiding any known seizure triggers, a seizure monitoring device could potentially protect someone. “It senses motion and can identify generalized convulsive seizures and sends an alert to someone else in the house,” Henry explained. “Buying one can’t hurt.”
Henry advises anyone with epilepsy to talk to their neurologist or epileptologist (a neurologist who specializes in epilepsy) about their risk for SUDEP.
What is epilepsy?
The simple definition of epilepsy is recurrent seizures that are not caused by another medical problem. Patty Osborne Shafer, an epilepsy nurse specialist at Beth Israel Deaconess Medical Center in Boston describes a seizure as “a disturbance” in the way messages are sent to the brain.
“It’s like a short circuit,” Shafer said. "The brain responds to the change in behavior with a seizure."
But it's important to note that having a seizure doesn’t equal an epilepsy diagnosis. “They can be caused by extremely high blood sugar or extremely low blood sugar. A high fever can trigger a seizure in babies,” Shafer, who is an editor at Epilepsy.com, told TODAY. “But if a person has more than one seizure and there’s no medical cause, that’s what epilepsy is.”
What are the main causes of epilepsy?
According to the American Epilepsy Society, a neurological professional organization, 1 in 26 people will develop epilepsy or recurring seizures in their lifetime. When counting both children and adults in the U.S., about 5 million people have a history of epilepsy.
“It can occur at any age but the incidence is highest in those under the age of 5 and adults over 55," Shafer said.
When the cause of epilepsy can be determined, the most common are a head injury, stroke, brain tumor or infection. Genetics can also play a role in developing epilepsy. With kids, there might be developmental abnormalities or scarring of the brain that triggers epilepsy. The cause is unknown for over 60% of cases.
“Researchers are trying to figure it out,” Shafer told TODAY. “Why do some people, after a head injury, develop epilepsy, but others don’t? It’s a big study.”
What happens during a seizure?
According to the Centers for Disease Control and Prevention, seizures are classified into two groups: generalized (involving the whole brain) and focal (starting in one area of the brain). Tonic-clonic seizures (formerly known as grand mal) and absence seizures are common generalized seizures. Absence seizures are typically seen in young kids. “It can look like a small staring spell,” Shafer said. “There might be some eye blinking. You might not even know someone is having one because they’re over so quickly.”
Tonic-clonic seizures are more dramatic. “Those are the ones you see on TV shows,” Shafer said. “The person loses consciousness. If they’re standing, they fall. The body gets stiff and there might be jerking of the arms and legs. They usually last about a minute or two.”
What can I do help someone who is having a seizure?
Remember these three words: Stay, safe, side. “You want to stay with person, keep them safe by moving things out of the way, and turn them on their side to keep their breathing clear,” Shafer explained. If the person is up and walking, it’s crucial to remain nearby so they don’t wander into traffic or fall down a flight of stairs.
There is no need to call for medical help if the person has known epilepsy and the seizure lasts less than five minutes. “If they recover normally, everything is OK,” Shafer said. “If a person has a seizure with loss of consciousness and they’re having two or three at a time, they need to get to the ER.” Pregnant women should also get checked out immediately.
Under no circumstances should you put an object in someone’s mouth to prevent them from swallowing their tongue. “It’s impossible to swallow your tongue,” Shafer said. “Just turn the person to their side.”
This story was updated to clarify the different types of seizures. For more information on what to do if someone is having a seizure, read here.