Sudden Unexpected Death in Epilepsy (SUDEP) refers to a person with epilepsy dying suddenly and prematurely with no other cause of death found. However, educating people with epilepsy and their caregivers might reduce the risk of SUDEP.
The new epilepsy.com report and the #AimForZero campaign were created to encourage people with epilepsy to strive for their best possible seizure control, lessen their risk of SUDEP, talk with healthcare providers about SUDEP, and use the hashtag to promote discussions about SUDEP.
Epilepsy is a medical condition that affects a person’s brain and nervous system. When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. The frequency of seizures are directly related to an epilepsy patient’s health-related quality of life.
SUDEP is a fatal complication of epilepsy, and while the mechanisms underlying it are still poorly understood, it may be the most common cause of death as a result of complications from epilepsy. There’s no one cause for SUDEP; they include respiratory, cardiac, and cerebral factors, as well as the severity of epilepsy and seizures in the patient.
SUDEP kills an estimated 2,600 people a year in the United States — some neurologists say the real figure is almost certainly higher — or one in 1,000 people with epilepsy. For people whose seizures are not controlled with medication, the fatality rate leaps to one in 150.
The special report, developed in collaboration with leading epilepsy experts, is based on evidence from published studies and on the results of an online survey of more than 1,000 people with epilepsy and caregivers that found that only 18 percent of respondents reported having discussed the risk of SUDEP with their doctor.
“Tragically, deaths from SUDEP continue to occur because physicians and patients aren’t having conversations about how even a single seizure can put a person with epilepsy at risk for SUDEP and about why it is so vitally important to strive for zero seizures,” Dr. Orrin Devinsky, MD, adviser to the Epilepsy Foundation SUDEP Institute, said in a press release.
“That’s why we are focusing on these four steps that people with epilepsy can take – starting today – to help achieve seizure control and protect themselves from this deadly yet preventable outcome,” said Devinsky, who is also a professor of neurology at New York University School of Medicine and director of the NYU Langone Comprehensive Epilepsy Center and North American SUDEP Registry.
Most people with epilepsy have seizures that can be controlled with drug therapy. But at least 3 out of 10 people with epilepsy continue to have seizures because available treatments do not completely control their seizures, according to the report.
The Epilepsy Foundation is committed to promoting ideas into therapies to stop seizures for people for whom current drug treatments don’t work. The foundation also believes education is critical for people with epilepsy to have better control of their seizures.
#AimForZero encourages people with epilepsy to implement four critical actions to reduce their SUDEP risk:
- Take medication as prescribed by their doctors. Anti-epileptic drugs will successfully control seizures for nearly 7 out of 10 people with epilepsy. Some medications tend to work better for certain kinds of seizures than for others. These medications only work if they are taken exactly as prescribed. The brain needs a constant supply of seizure medicine to continue to prevent seizures.
- Encourage people with epilepsy to get enough sleep. If they are not getting the recommended amount of sleep, do not wake up feeling rested, or do not have energy for their daily activities, they should work with their healthcare provider to find ways to ensure they are getting enough sleep. People who have a sleep disorder or seizures at night can also be sleep-deprived.
- Limit alcohol consumption. Seizure medications can lower a person’s tolerance for alcohol, increasing the immediate effects of alcohol and affecting a person’s awareness, reflexes, coordination, and ability to drive safely. People with epilepsy are at a higher risk of seizures after drinking alcoholic beverages.
- Strive to stop seizures. Unfortunately, too many people with epilepsy whose seizures can be controlled accept continued seizures in their life and may be unaware of strategies to prevent them. #AimForZero encourages people with epilepsy and their caregivers to strive for zero seizures and to talk with their healthcare team about the risk of continued seizures and SUDEP.
People with treatable epilepsy and their healthcare providers incorrectly consider that seizures are controlled if the person has them rarely or in a predictable manner. But these people are still at risk for SUDEP.
Proper seizure control means having no seizures at all. Learning self-management of epilepsy is crucial to help reduce the risk of seizures. Correct self-management is a team effort between patients, their caregivers, and their healthcare providers.