If you or somebody you love has epilepsy, it is imperative to understand the risks of Sudden Unexpected Death in Epilepsy, a.k.a. SUDEP. SUDEP is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found. So, a person who has a fatal accident while doing something during a seizure like biking does not count as a SUDEP death. According to the World Health Organization (WHO), over 50 million people worldwide have epilepsy, and researchers estimate that one in 1,000 of them die of SUDEP annually.[1] Although it’s the largest cause of death among people with epilepsy, doctors still don’t know exactly what causes SUDEP. Current research points to problems with breathing, heart rhythm, and brain function irregularities that occur during a seizure.
Fifty thousand deaths per year globally related to an illness that’s been around for millennia, and scientists are still trying to uncover answers. While epilepsy is mysterious, doctors are certain that the best way to prevent SUDEP is to lower your risk by controlling seizures. I had uncontrollable seizures for decades, despite trying 17 different anti-convulsants. When my then-neurologist suggested elective brain surgery to treat the seizures in 1992, it terrified me. Twenty-two years and several medications later, I vanquished my fears and opted for a right temporal lobectomy. Fear of SUDEP played a role in my decision and being a parent bolstered my bravery reserves. I worried my loss of awareness during seizures jeopardized my children’s safety and wellbeing. When the neurologist reminded me that uncontrolled seizures could lead to SUDEP, I knew surgery was the only responsible option. I couldn’t risk leaving the kids motherless.
I had a temporal lobectomy in 2014, which was complicated, but ultimately successful. I am grateful to Brigham and Women’s Hospital’s Neurology team for informing me about SUDEP risks and encouraging the brain surgery option. I’ve been seizure-free for almost seven years, so I likely won’t be one of the unlucky people who die from SUDEP. But every year 50,000 people whose seizures are not under control will. We have the resources and technology to send billionaires on joy rides into space, but the neurology field still doesn’t know what causes SUDEP. There’s something wrong with this picture.
Occasionally, SUDEP makes the news when somebody with celebrity status dies from it. Most recently, South African Kwaito musician, Tokollo Magesh Tshabalala died from a seizure at age 45 on August 15th. He was found by a family member after dying in his sleep. In December 2021, former Denver Broncos quarterback Demaryius Thomas was found dead in the shower after suffering a seizure at age 34. And in 2019, actor Cameron Boyce died in his sleep after having a seizure at age 20. But most of the 50,000 deaths per year go unnoticed other than by their grieving loved ones.
In 2014, a British nonprofit SUDEP Action launched SUDEP Awareness Day, now known as SUDEP Action Day. Held annually on the third Wednesday in October, SUDEP Action Day aims to empower those with epilepsy by encouraging them to work with their providers to reduce epilepsy and SUDEP risks. SUDEP Action Day also aspires to highlight the need for increased epilepsy research funds, resulting in improved treatment options.
The WHO lists epilepsy as the most common chronic neurological disorder worldwide. Approximately 70% of people with epilepsy could be seizure-free if properly diagnosed and treated. But often health professionals in low-income countries aren’t trained to recognize, diagnose and treat epilepsy, and several resource-poor countries don’t even have access to anti-seizure medications. Furthermore, given the history of stigmatization/discrimination against those with epilepsy, many avoid seeking treatment, as they’re afraid of the social consequences they might face if they admit to having epilepsy. Lack of treatment increases SUDEP risk.
This month’s blog is dedicated to spreading the word about SUDEP Action Day. Increased awareness about this fatal outcome is the best way to prevent it. If you or someone you know has epilepsy, speak with the neurologist about SUDEP and its risk factors. Apparently, some practitioners worry that discussing these might frighten their patients, but clarity allows us to make informed choices about treatment and lifestyle that reduce SUDEP risks. This is critical for those who have intractable seizures, as they are at highest risk for SUDEP. Reviewing SUDEP risk factors with your neurologist and taking steps to reduce them is a critical piece of self-care for patients with epilepsy. Epilepsy patients and providers must #TalkSudepNow.
[1] Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia. 2014;55(10):1479–1485. doi:10.1111/epi.12666
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