SUDEP Institute Director Sally Schaeffer shares why SUDEP is important to talk about and how the SUDEP Institute can help make a difference.
Sadly, sudden unexpected death in epilepsy (SUDEP) has been making a lot of headlines. And while the public is just learning more about it, the Epilepsy Foundation’s SUDEP Institute has been aggressively seeking awareness of this loss from epilepsy since its establishment in 2013.
Mortality in epilepsy such as SUDEP is difficult to speak about, especially without a resolve on how to prevent it. But each year 1 out of 1,000 adults and children with epilepsy die from SUDEP. For people with poorly controlled seizures, the risk of SUDEP is much higher — 1 out of 150 each year.
Our four top priorities
Awareness and Education
Each person living with epilepsy is different, and we want to make sure everyone is living their life to the fullest. We empower those living with epilepsy by providing information and resources to discuss SUDEP with their medical team to understand their seizure management. We also encourage medical professionals to openly discuss SUDEP to help their patients reduce their risk. Knowledge is Power.
Every year on October 23rd, the SUDEP Institute joins organizations from across the world to acknowledge SUDEP Action Day. Find out more about how you can support the SUDEP Institute and raise epilepsy awareness by taking #5forEpilepsySafety leading up to and on October 23rd.
Supporting those affected by losses from SUDEP and other mortalities from epilepsy
Very often, persons with epilepsy and their families are never told about SUDEP and this sudden and unexpected passing can be a shock, leaving loved ones with more questions than answers. They feel alone and isolated with this loss. To help those who have lost from epilepsy, we offer bereavement resources.
Our support specialist can talk to individuals via phone, email or text — however you feel comfortable. We also have a secure, online support group with other bereaved individuals. This group offers a chance for others to meet and talk about their losses from SUDEP and epilepsy-related death.
Request free assistance from our grief support specialist by calling our 24/7 Helpline at 1-800-332-1000 or email us at ContactUs@efa.org.
Develop SUDEP Prevention Strategies
One theory for why SUDEP happens relates to compromised cardiac or respiratory function occurring before, during, or after the seizure. However, it is difficult to predict what a specific person’s risk level might be for SUDEP. We are currently funding two next generation scientists through the American Epilepsy Society / Epilepsy Foundation (AES/EF) partnership to encourage the best and brightest to be focusing on understanding SUDEP causes.
The SUDEP Institute is also sponsoring the SUDEP Biomarker Challenge which challenges researchers to find predictive biomarkers to identify people at risk for SUDEP or life-threatening seizures that compromise those cardiac or respiratory functions. If we can identify who and why a person is at high risk, we can try different interventions to prevent SUDEP from happening.
Working with others
We cannot do this important work in a vacuum. To accomplish our goals, the SUDEP Institute works with other leading epilepsy organizations to promote information sharing and facilitate coordination and collaboration.
We believe that by working together, we can more quickly raise awareness, drive research and promote prevention.