Awakening Awareness About SUDEP

When a neurologist told my parents in 1970 that I was epileptic, he assured them it was nothing to be concerned about, despite the fact he was prescribing a strong anti-convulsant for me.

"No one can die from epilepsy," the neurologist told my parents. "Tim won't get hurt as long as he's careful crossing streets and stays away from your power tools." He added, "It's not important to tell anyone else other than his teachers what to look out for, and he'll be just fine."

Whoa, there! Be just fine? "Ancient" neurologists hadn't even evolved into epileptologists yet, let alone know about SUDEP: sudden unexpected death in epilepsy.

When epilepsy caused Cameron Boyce's death in his sleep

People started becoming more acquainted with the term when popular Disney movie star Cameron Boyce was victimized by SUDEP in 2019 – half a century after my parents were assured epilepsy couldn't kill. Cameron died in his sleep, but it took a medical autopsy to determine that the otherwise healthy, 20-year old's death had actually been caused by an epileptic seizure.

SUDEP: sudden unexpected death in epilepsy

Actually, I'm embarrassed to confess that I didn't know the term until 3 years ago, and probably 90% of the people who join the virtual support group I facilitate over the southeastern states still don't know it. Once the term was explained to me, I was embarrassed about what people would think of an advocate like me who didn't know what it was. Was it a new phenomenon, like the exploding rate of allergies to peanuts threatening children nowadays? But epileptologists have told me that it's always been with us.

When doctors were telling my parents that epilepsy couldn't kill, people made sorrowful exclamations about people's deaths like, "I never would've expected him to die of a heart attack in his sleep. He just seemed so young and healthy!" Or they'd say, "Doctor just thinks her blankets and pillows caused her to suffocate. Shame."

One in 1,000 people with epilepsy can die of SUDEP, but experts weren't questioning why someone who was healthy but epileptic would die if cardiac arrest or asphyxiation.

Another prominent figure's death in her sleep

Some recognition might have sparked with the SUDEP tragedy of Olympic gold medalist Florence Griffith Joyner when her husband couldn't wake her in 1998. Even though her epilepsy had been diagnosed years earlier, EMTs called in murder investigators as to who might have strangled her.

When they turned up nothing, her character was questioned, assuming that she had overdosed on dangerous drugs. Finally, a coroner's autopsy made the connection that epilepsy in her sleep had caused her death. Nevertheless, her death didn’t ignite an "awakening" to SUDEP.

First responders are still learning about SUDEP

Knowledge hadn't changed much in the two following decades. It nauseated me to hear a friend tell how she was treated like a criminal when her 26-year-old son's SUDEP in 2019. Tanisha, a caregiver, was puzzled why he didn't get out of bed. She entered his bedroom and found his face purple.

The first responders were too late to help him, so they called the police because they thought he'd been choked to death. Police set up crime-scene tape marking her house for all to see, and blocked her from calling a funeral home to take his body. Several hours later, the leading police officer shamefully admitted that it was clear that there "is love in this home" and apologized for their standard operating procedure.

All of this just four years ago! And the paramedics had never even heard of SUDEP.

Raising awareness about SUDEP

I've become acquainted with Thomas Stanton, president of the DannyDid Foundation, a nonprofit that educates people about SUDEP and protection devices. The foundation was started in memory of his nephew. Danny had been epileptic since he was a toddler.

Only 4 days after a neurologist had given Danny an exam and encouraged the family that he might grow out of it, Danny died in his sleep. None of emergency responders knew of SUDEP, either.

Who is most susceptible to SUDEP?

This still isn't certain, since medical and emergency professionals are still getting acquainted with the concept. Statistics show that most victims have tonic clonic (gran mal) seizures during their sleep when no one is aware it is happening.¹

People of all ages appear susceptible, a majority are in their 20s–40s, and the median age is 26. How much gender plays in it is not certain, but 68% of the victims are male. Perhaps most alarming of all is that only 37% took their last scheduled dose of anti-seizure medication, meaning nearly 2/3 did not. The biggest things people can do to avoid becoming SUDEP victims are to routinely get a good night's sleep and to never miss a dose of medicine.¹

The threat of seizures during sleep

There are exceptions. A friend of mine had a 14-year-old girl make herself a grilled cheese sandwich after coming home from high school, after which, she told her mom that she felt like taking a nap and closed the bedroom door. Only, she never did wake up. So anyone can be at risk if his or her seizures happen in their sleep.

Seizure tracking technologies are advancing

New technologies exist to protect against SUDEP. Smart watches, like the Inspyre App and the Embrace Watch, are made that can detect motions typical of a seizure and automatically message caregivers or emergency responders if programmed to do so.

Also, a device called EMFIT Movement Monitor is a net of sensors that might be laid beneath bedsheets that will pick up on seizure-like movements of the sleeper and notify caregivers with an alarm. DannyDid Foundation helps people learn about such systems and find financial assistance if devices are too expensive.²

More awareness is needed

People need to demand their epileptologists to tell them about SUDEP, the risks imposed by their types of seizures, and what methods are best for them to avoid SUDEP. And to always, always remember to take their medicine.