Landover, MD – In response to the urgent need to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) among people with epilepsy and their caregivers, the Epilepsy Foundation’s SUDEP Institute today issued a special expert consensus report, #AimForZero: Striving Toward a Future Free from Sudden Unexpected Death in Epilepsy. The new epilepsy.com report is the centerpiece of a multi-channel campaign to motivate people with epilepsy to strive for their best possible seizure control to reduce their risk of SUDEP, speak with their health care team about SUDEP, and use the dedicated #AimForZero hashtag to drive discussions of SUDEP.
SUDEP occurs when a person with epilepsy in their usual state of health dies unexpectedly; it is the most common cause of death from epilepsy. An estimated 1 in 1,000 adults in the U.S. with epilepsy dies from SUDEP each year; however, if seizures are uncontrolled the risk increases to 1 in 150.
The SUDEP Institute developed the special report in collaboration with leading epilepsy specialists and by reviewing research studies and conducting an online survey of more than 1,000 people with epilepsy and caregivers. It highlights four actions people with epilepsy can take to reduce their risk of SUDEP: take epilepsy medication as prescribed; get enough sleep; limit alcohol; and strive to stop seizures.
“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,” said Orrin Devinsky, MD, advisor to the Epilepsy Foundation SUDEP Institute, professor of neurology at the New York University (NYU) School of Medicine, and director of the NYU Langone Comprehensive Epilepsy Center and North American SUDEP Registry. “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.”
John Popovich of Potomac Falls, Virginia, lost his 19-year-old son John Paul to SUDEP. “Even though John Paul was first diagnosed with epilepsy at 6 years old, it wasn’t until a week after his funeral 13 years later that I heard the term ‘SUDEP’ for the first time,” he said. “John Paul experienced only three seizures in all the years since his diagnosis, so his mother and I didn't know about the importance of preventing seizures, and John Paul's doctor didn't discuss it with us. If we had known about the risk of SUDEP and its triggers, John Paul might still be with us. If your child, loved one, or someone you know has had seizures, I urge you to be proactive and learn what you can about SUDEP.”
Four Critical Actions May Save Lives
Nearly 30 percent of people living with epilepsy today have seizures that resist all current treatment options. The Epilepsy Foundation supports a wide-range of research studies and the development of new therapies to help change lives.
The Foundation also believes education is key for people living with epilepsy who can achieve greater seizure control. People with treatable epilepsy and their health care teams mistakenly believe that seizures are controlled if the person has them rarely or in a predictable manner. However, they are still at risk for SUDEP; true seizure control means having no seizures at all. Learning self-management of epilepsy is crucial to help reduce the risk of seizures. Proper self-management is achieved through dedicated partnership between the person with epilepsy, their caregiver, and their health-care team. Managing seizures involves many steps – preventing triggers or situations that a person can easily modify are key steps along the way. The #AimForZero campaign urges people with epilepsy to adopt four key self-management actions to help avoid SUDEP.
- Taking epilepsy medications as prescribed is critical because these medicines are only effective when taken regularly.
- Getting enough sleep helps patients avoid sleep deprivation, which can trigger seizures.
- Limiting alcohol consumption is important because seizure medicines can lower the tolerance for alcohol and people with epilepsy are at a higher risk of seizures after drinking alcoholic beverages.
- Finally, striving to stop seizures motivates people with epilepsy and their caregivers to strive for zero seizures and talk to their healthcare providers about the risk of continued seizures and SUDEP.
About #AimForZero: Striving Toward a Future Free from Sudden Unexpected Death in Epilepsy
The SUDEP Institute’s special report was based on published research, a survey of more than 1,000 people with epilepsy and caregivers, and interviews with the following leading epilepsy specialists:
- Orrin Devinsky, MD, Professor of Neurology at the NYU School of Medicine and Director of the NYU Langone Comprehensive Epilepsy Center and North American SUDEP Registry
- Jacqueline French, MD, Chief Scientific Officer for the Epilepsy Foundation and Professor of Neurology at New York University
- Dale C. Hesdorffer, PhD, Professor of Epidemiology at Columbia University
- Samden Lhatoo, MD, Professor of Neurology, Case Western Reserve University School of Medicine
- Philippe Ryvlin, MD, PhD, Professor of Neurology, Lyon University, France
- Joseph Sirven, MD, epilepsy.com Editor-in-chief and Professor of Neurology and Chairman of the Department of Neurology, Mayo Clinic, Arizona
When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. Epilepsy affects 3 million people in the U.S. and 65 million worldwide. This year, another 150,000 people will be diagnosed with epilepsy. Because available treatments do not completely control their seizures, 3 out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control. SUDEP is the leading epilepsy-related cause of death; each year in the U.S., SUDEP kills more than 2,750 people with epilepsy. For more information about SUDEP, please visit epilepsy.com/AimForZero.
About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with nearly 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP.