- Experts told Insider Demaryius Thomas' sudden unexpected death last week was likely from epilepsy.
- Non-Hispanic Black people had the highest age-adjusted death rate for epilepsy, a study found.
- Experts told Insider fixing the disparities requires increased awareness and quality healthcare.
The abrupt death of retired NFL wide receiver Demaryius Thomas at the age of 33 last week — due to what his family described as a seizure — has put the spotlight on the disproportionate mortality rate Black men face from seizure disorders.
Black people had the highest age-adjusted death rate for epilepsy from 2005-2014, a Centers for Disease Control and Prevention study found, and more men die from the disorder than women.
Experts told Insider these numbers reflect a larger issue of Black Americans' access to quality healthcare and stigma.
Black Americans are far more likely to be uninsured than their white counterparts, which contributes to a higher mortality rate, Dr. Jacqueline French, the chief medical and innovation officer at the Epilepsy Foundation, told Insider.
Pamela Price, director of The National Brain Health Center for African Americans, said education on epilepsy and seizure disorders is crucial.
"How they present; how to recognize them — we can have loved ones that are having seizures that we think is just a nervous tick," Price said. "We don't realize that is a form of a seizure."
Epilepsy can develop after brain injury, stroke, or brain tumor
Epilepsy is a neurological disorder that leads to recurrent seizures. Sometimes they're grand mal seizures that result in full-body shakes, but sometimes someone having a seizure stares into space or experiences body twitches.
Scientists are unclear of the cause of the malady, but epilepsy can be more likely after brain injuries or abnormal brain development. Diagnosis is most common at a young age but it can also be diagnosed later in life following a brain injury, stroke, or brain tumor.
An estimated 637,000 African Americans are living with epilepsy or a seizure disorder, according to the Epilepsy Foundation. Roughly 375,000 have "active" epilepsy, meaning they have been diagnosed and are taking seizure medication or had at least one seizure in the past year.
One in 26 people will have epilepsy sometime in their life, according to the Epilepsy Foundation.
—Tim Tebow (@TimTebow) December 10, 2021
Thomas' cousin, LaTonya Bonseigneur, told the Associated Press that a friend found him in the shower Thursday evening. French said that is not uncommon. She said Thomas likely had "active" epilepsy.
"There are several people who've had seizures in the shower and fallen down unconscious in the shower," French said. "Covered the drain with their body and died in a small amount of water that fills up a shower or bathtub. They drown. We don't want anybody to die like that."
In the police report Insider obtained, Roswell police said they received a 911 cardiac arrest call from Thomas' friend around 7 p.m. on December 9 and found Thomas "lying down in the shower on his back."
The Fulton County Medical Examiner conducted an autopsy and is waiting for "laboratory studies and microscopic examination of tissue slides," to return before issuing a manner of death.
Thomas' family said he was having unexpected seizures for more than a year
Bonseigneur told the Associated Press that Thomas had been "suffering from seizures for over a year."
French said that it sounded like Thomas died from sudden unexpected death in epilepsy (SUDEP).
The Epilepsy Foundation defines SUDEP as the sudden, unexpected death of someone with epilepsy who was otherwise healthy. SUDEP can trigger cardiac arrest, Price said. Every year, about one in 1,000 people die of SUDEP, according to the CDC.
—Denver Broncos (@Broncos) December 10, 2021
In 2019, Thomas was in a car accident, and reports at the time said he had minor injuries.
Another possible contributing factor to Thomas' seizures, Price said, could be concussions. He had at least one in 2010 during his NFL career, the Denver Post reported.
"It's well documented that NFL players are at increased risk for having CTE [chronic traumatic encephalopathy] so any brain injury significantly increases the risk of epilepsy or seizures in terms of the things we do know that can cause it," Price said.
French said at least half the time, the catalyst for a seizure is unknown, but it's still extremely rare to die of one.
"Seizures are common in any community you are talking about," French said. "Epilepsy is when the brain is hyperexcitable, and there is the potential for a seizure to happen at any time. And it's a very horrible situation to be in. Because you can never know from day to day whether it's going to happen on that particular day, and it sounds like that is the situation that Demaryius Thomas was in. He had epilepsy. He not only had seizures; he had epilepsy."
Improving quality and access to healthcare for Black Americans has to be a priority, expert says
The solutions to leveling mortality disparities from a seizure disorder are complex, French and Price said. Roughly two-thirds of people diagnosed with epilepsy can take medicine to regulate the seizures — essentially getting rid of them, French said.
For the remaining one-third, French said, surgery, dietary changes, and medical devices can control the severity of the seizures.
French said she wants everyone to have access to those remedies, including Black Americans; that's why improving quality access to healthcare is so important.
"We want to make sure everyone has the opportunity to get the best care so that what happened here doesn't happen again."