It was Easter 2003, and something was wrong with Kimberly Taube. She hadn’t contacted her sister, who had been cooking a family dinner and was waiting for Taube to check in. Multiple phone calls to her home bounced to voicemail. Concerned, her sister drove to Taube’s apartment and let herself in with her spare key. Kimberly was dead in her bed.
Her death certificate said “cardiac dysrhythmia,” but her sister, Nikki Botwinik, thinks it was something else: epilepsy. Taube’s family believes that the 28-year-old, who had been diagnosed with epilepsy when she was 12, experienced sudden death in epilepsy, or SUDEP. An autopsy revealed that Taube hadn’t been taking her daily medication, which probably triggered a deadly seizure.
If Taube did die because of her disorder, she would be one of many, but therein lies a public health problem — officials aren’t sure how many. For example, data that the Centers for Disease Control and Prevention compiles from death certificates shows that epilepsy was responsible for 1,172 deaths in 2013. However, researchers estimate that at least 2,750 people died of SUDEP in 2013. Although estimates of SUDEP’s prevalence vary widely, at least 1 out of 1,000 people with epilepsy is likely to die suddenly as a result of their condition.
Americans who die from epilepsy do so either directly from seizures that cause the heart or lungs to stop or damage the brain, or indirectly through drownings and accidents caused by seizures. Studies have shown that epilepsy is often not listed as a cause of death on death certificates, and as a result it’s impossible for public health officials to quantify the problem and to offer guidance.
In a recent editorial in Neurology, the journal of the American Academy of Neurology, a group of experts sounded the alarm on what they call a greatly underestimated problem. “Despite clear evidence of an important public health problem,” they write, “efforts to assess and prevent epilepsy-related deaths remain inadequate.”
Epilepsy is a neurological disorder characterized by recurrent seizures. It affects an estimated 2.2 million people in the United States, with about 150,000 new diagnoses each year. It can be inherited or caused by a traumatic brain injury, but its cause is unknown in 60 percent of cases. Epilepsy can be treated with anti-seizure medication, but there is no cure.
Neurologist Orrin Devinsky, lead author of the opinion piece in Neurology, said that because there has been “no attempt to systematically classify, count and surveil” epilepsy deaths, it is hard to know what circumstances may make someone particularly vulnerable. As a result, many patients and doctors rely on anecdotal evidence or ideas that may not be accurate.
“When I was a resident, nobody told me that the vast majority of epilepsy deaths come from seizures,” he says. “Nobody told me about the dangers.” Until recently, doctors often got outdated information about how seizures affect the brain. Neurologists denied that seizures cause deaths and, as a result, patients have stayed uninformed. “It’s a triple tragedy: The patients don’t know, the friends don’t know, the family doesn’t know.”
Along with colleagues, Devinsky is pushing for a publicly funded campaign to educate both doctors and patients about SUDEP and the dangers of seizures. If more people knew that skipping medication, drinking too much alcohol or getting too little sleep could trigger a deadly seizure, he says, they might change their behavior.
“It’s really very simple,” he says. He points to public health campaigns such as the one that cut the sudden infant death syndrome mortality rate from nearly three in 2,000 live births to one in 2,000 by telling parents to place their infants on their backs in their cribs. When states were mandated to track deaths by SIDS, he notes, public awareness — and research budgets — grew.
But education may not be enough. For people with epilepsy, medication can be a costly, inconvenient burden with cognitive and other side effects that some people find difficult. In a 2007 study, 29 percent of patients reported that they were not adhering to their treatment regimen.
Kimberly Taube was such a patient: Her sister remembers that Taube had trouble remembering to take her medication on time. After her death, Botwinik began working to raise awareness of the risks epileptics face. She has raised more than $1,000 from family and friends for Citizens United for Research in Epilepsy, whose mission is to find a cure.
Botwinik also works with children to reduce the stigma about the disorder. Her 13-year-old daughter made epilepsy awareness the focus of a Girl Scouts project, writing a book about what children should do if they see another child having a seizure. She distributed it to teachers in her Orlando school district.
“Kimberly was the strongest of all of us,” Botwinik says as she recalls her sister facing the challenges of her epilepsy, such as losing her driver’s license because of frequent seizures and being unable to care for her infant niece.
“She just handled it,” says Botwinik, who remembers her sister’s humor and resilience. “She did what she needed to do. But she died young.”
Correction: In an earlier version of this story, neurologist Orrin Devinsky’s name was spelled incorrectly. This version has been updated.
Blakemore regularly writes for The Post on health and science issues.