Editor’s Note: Tom Stanton is Executive Director of the Danny Did Foundation, a Chicago-based nonprofit that supports families who face epilepsy. Margaret Storey is Professor and Associate Dean in the College of Liberal Arts and Social Sciences at DePaul University and a member of the Board of Directors of the Danny Did Foundation. The opinions expressed in this commentary are those of the authors; view more opinion articles on CNN.
The death of Cameron Boyce, the talented Disney actor who according to his family died in his sleep following a seizure at the age of 20, resonates deeply with the experiences of so many other families who have lost their loved ones to Sudden Unexpected Death in Epilepsy (SUDEP). Boyce’s family has said his fatal seizure was the result of epilepsy, and while Boyce’s final cause of death has yet to be determined, his tragic loss is a reminder that every year, about 1 in 1,000 people with epilepsy suddenly die. Among those whose seizures are not controlled by medicine, the rate rockets to a stunning 1 in 150.
We know the scourge of SUDEP intimately. One of us – Tom Stanton – is the uncle of Danny, who died at the age of 4 after a nighttime seizure. Danny was found by his mom, lifeless in the bottom bunk bed he shared with his older brother. Margaret Storey is the mother of Josie, who has Aicardi Syndrome, an epilepsy disorder in which seizures are rarely, if ever, controlled, and in which early mortality is common.
Josie has multiple seizures daily.
As part of the Danny Did Foundation (DDF) – founded by Danny’s parents, Mike and Mariann Stanton – we have dedicated ourselves to helping families understand the risks of SUDEP, and how to mitigate those risks.
And though we have made important strides, the tragic fact is that, in the 10 years since Danny died, stories like Boyce’s continue to happen all too frequently.
And most experts agree that it is likely statistics on the rate of fatality underestimate reality.
Our current data don’t include many whose deaths are not recognized by coroners as SUDEP, nor do they fully encompass all epilepsy-related deaths.
These statistics should shake all of us to the core. But awareness of epilepsy’s mortality risk remains stubbornly low, even among people with epilepsy and their doctors.
This is partly due to stigmatization – both around epilepsy itself, and around discussion of mortality risks within the diagnosis.
Members of our own Board of Directors can testify to the courage it took to “come out” as having epilepsy to friends and colleagues, and we understand that Cameron Boyce and his family likewise kept his epilepsy diagnosis private.
That it remains so hard to reveal an epilepsy diagnosis is an indictment of society – epilepsy advocates included – for not making more progress in dismantling continuing stigma and discrimination, most of it rooted in myths – like believing it’s contagious – about epilepsy’s causes and fears of what to do if a person has a seizure.
But the crisis of awareness is also a result of the fact that doctors often remain reluctant to discuss SUDEP with newly diagnosed patients and their families. Our staff at DDF regularly hear patients and their families say that they have never heard of SUDEP from their doctors; even worse, some doctors persist in saying that seizures cannot be fatal. Perhaps they are worried about frightening people, or are trying to combat the stigma of the disease by emphasizing the ways that people continue to live normal lives despite it.
But we can – and must – do better. Too many precious lives are at stake.
First, stop the debate about whether to disclose the risk of mortality – and specifically SUDEP – with patients and their caregivers. It should simply be part of the standard of care that physicians have open and honest conversations with patients and caregivers at the time of epilepsy diagnosis. The script is pretty straightforward: Mortality rates for people with epilepsy are up to three times higher than the general population; you should know that because it’s your life.
Second, rather than emphasizing “normalcy” within epilepsy, emphasize “empowerment” over the risks associated with the disease. The mortality conversation must be accompanied by clear steps patients and their families can take to minimize the threat. The best way to prevent SUDEP is to prevent seizures, but short of that, having another person present during or right after a seizure is a huge advantage for safety. Most SUDEPs occur when a person is alone, but technologies and devices exist that can alert spouses, caregivers, friends when a seizure happens, so they can conduct a well-being check. A growing number of alerting systems exist, but awareness of them remains low, and insurance coverage is rare, even for the few among them that have gained FDA approval. Providers and advocates can do more to ensure that alerting devices are presented to patients as an added safety measure within a treatment plan.
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Third, we need to get a better understanding of how often SUDEP really occurs in order to trigger the kind of federal research funding necessary to discover the mechanisms behind why and how SUDEP happens. To do this, we need to foster a robust partnership between people with epilepsy, their families, and the medical and public health sector. Initiatives like the North American SUDEP Registry (NASR) and Partners Against Mortality in Epilepsy are critical to this effort, as is dedicated education about SUDEP for medical examiners and coroners.
We at the Danny Did Foundation extend our deepest condolences to the family and friends of Cameron Boyce, and to all those affected by SUDEP. It is our conviction that we can best honor their memories by redoubling our efforts to prevent this tragedy from happening to others. We invite you to join us in our fight.