The death of actor Cameron Boyce this month at the age of 20 is a stark reminder that epilepsy can be fatal.
Boyce was found dead in his home in North Hollywood, Los Angeles, in the early afternoon of July 6. The LA county medical examiner subsequently performed an autopsy and concluded that he died of natural causes, but chose to defer listing a cause of death pending further tests.
However, his family has been more forthcoming.
“Cameron’s tragic passing was due to a seizure as a result of an ongoing medical condition, and that condition was Epilepsy,” the Boyce family spokesperson told to media into statement on Tuesday.
Their admission has prompted questions and concerns from the public and many of Boyce’s adoring fans, namely: how could an otherwise healthy, young man die from this common neurologic condition?
And while it isn’t possible to say for certain, medical experts contacted by Healthline pointed the finger at SUDEP or sudden unexpected death in epilepsy, a rare but serious event that occurs among individuals with epilepsy.
What is epilepsy?
Epilepsy is a chronic brain disorder that results in recurring seizures. It is the fourth most commonTrusted Source neurological disorder in the United States and affects people of all ages. About 3.4 million people in the United StatesTrusted Source have epilepsy, or about 1.2 percentTrusted Source of the population.
Its hallmark feature, recurring seizures, occurs due to abnormal changes in brain wiring. These signals can result in mild sensations, behavioral changes, and violent muscle spasms.
Injury and death can occur from the seizure itself, such as falling and hitting one’s head or breaking a bone due to a flailing limb.
The mystery of SUDEP
SUDEP is the most common causeTrusted Source of death among both children and adults with epilepsy and is classified differently than deaths that occur from injury sustained during a seizure. More than 1 out of 1,000 individuals with epilepsy die from SUDEP annually.
Nonetheless, it still remains something of a mystery.
“It’s not entirely understood why some people die from their seizures,” said Dr. Fred Lado, PhD, regional director of epilepsy for Northwell Health’s Eastern and Central Regions.
“What seems to happen during a SUDEP event is that there is a seizure. Then the seizure ends and there is a period of often some minutes after the seizure where it seems that often people stop breathing as a consequence of the seizure,” said Lado.
Other probable mechanisms for SUDEP include heart arrhythmia or cardiac arrest following a seizure, interference with brain functioning resulting in dangerous changes breathing and heart rate, or a combination of any of these factors.
Researchers also admit that SUDEP might result from something else entirely that hasn’t yet been discovered.
SUDEP occurs most frequently during sleep and can involve other compounding risk factors.
“If someone has a seizure they could be face down, and in the post-seizure state your brain is in a reboot phase, so you don’t really have the awareness to turn over to your back so you don’t suffocate,” said Dr. Asim Shahid, division chief of neurology at University Hospitals Cleveland Medical Center and chief of pediatric neurology at UH Rainbow Babies & Children’s Hospital.
Additionally, during the night, people with epilepsy are less likely to be observed, meaning help may not arrive in time. The presence of pillows and other bedding can also increase the risk of suffocation during and following a seizure.
Every seizure presents the risk, albeit a small one, of an occurrence of SUDEP, but certain populations are known to have higher risk than others.
“The factors that really matter when we are looking at SUDEP are the type of seizures: So, we know that convulsive seizures have a higher correlation with individuals dying of SUDEP, and uncontrolled seizures. So, if they have frequent seizures, they are at a higher risk of dying,” said Shahid.
Generalised tonic-clonic seizures (sometimes referred to as grand mal seizures) are recognized as the greatest risk factor for SUDEPTrusted Source.
Since incidences of SUDEP or near-SUPEP (when the individual survives the incident) can be difficult to identify and treat, preventative measures are of the utmost importance. The best prevention is controlling seizures through medication and lifestyle.
Ways to stay safe with epilepsy
Epilepsy can often be controlled through a variety of medications. If you take epilepsy medication, don’t miss a dose.
“Medication compliance is very important,” said Lado.
From a lifestyle perspective, avoid triggers that are known to cause seizures. These can include common drugs like nicotine and caffeine, lack of sleep, and flashing lights.
During a convulsive seizure, there are basic first aid stepsTrusted Sourcethat individuals can undertake to help, including ensuring that the person having the seizure is safely lying down on the floor, loosening clothing or jewelry around their neck, and turning them on their side.
It is important not to put anything in their mouth. A person having a seizure cannot swallow their tongue.
“It’s not likely that most bystanders are going to be looking at a SUDEP case. They are much more likely to be looking at a convulsion and knowing what to do there is going to be more useful,” said Lado.
