#AimForZero

The 3 million people in the United States living with epilepsy need to know about the potential deadly impact of a single seizure and how they can strive to #AimForZero seizures to reduce their risk of Sudden Unexpected Desth in Epilepsy (SUDEP).

The Importance of Understanding SUDEP Risk

 

Every year, 1 in 150 people who have uncontrolled seizures dies from SUDEP.1 Accordingly, experts regard SUDEP as the leading epilepsy-related cause of death2; however, in a recent survey of more than 1,000 people with epilepsy and caregivers of people with epilepsy, only 18% of respondents reported having discussed the risk of SUDEP with their doctor.

When people with epilepsy and their caregivers are empowered with information to understand SUDEP, they can take action to reduce risk of harm. To respond to this urgency, raise awareness, and promote steps that can help prevent SUDEP, the Epilepsy Foundation’s SUDEP Institute is issuing this Epilepsy.com Special Report and launching a dedicated #AimForZero hashtag to facilitate greater discussion of SUDEP.

Four Behaviors to Fight Seizures and SUDEP

#AimForZero encourages people with epilepsy to adopt four critical actions to reduce their risk of SUDEP:

  1. Take medication as prescribed
  2. Get enough sleep
  3. Limit alcohol
  4. Strive to stop seizures

Putting these behaviors into action can be challenging for people with epilepsy — and their efforts must be supported by caregivers and healthcare team members.

#AimForZero Facebook Live Chat November 22nd 

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The Epilepsy Foundation hosted an #AimForZero Facebook Live chat on Tuesday, November 22, 2016, from 8:00 p.m. to 8:30 p.m. EST. The Facebook chat discussed how college students can integrate the four key seizure self-management behaviors featured in #AimForZero. The Facebook live chat was hosted by:

  • Wendy Miller RN, PhD, Epilepsy Foundation Professional Advisory Board & epilepsy.com Community Advisor
  • Ryan Brown-Kohalmy, Social Media Coordinator for the Epilepsy Foundation

Find the next chat by keeping up-to-date with our Facebook

#AimForZero Twitter Chat November 14th

twitter chat

The Epilepsy Foundation hosted an #AimForZero Twitter chat on November 14th, 2016, from 2:00-2:30 p.m. EST. 

The purpose of this Twitter chat was to encourage conversation and provide advice around epilepsy and seizure management while recognizing National Epilepsy Awareness Month. The participating panel included:

  • Dr. Joseph Sirven, epilepsy.com Editor-in-Chief and Chairman of the Department of Neurology at the Mayo Clinic in Phoenix, Arizona (@jsirven)
  • Patricia Shafer, RN, MN, epilepsy.com Associate Editor and Community Manager and Epilepsy Clinical Nurse Specialist at the Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center, in Boston, Massachusetts (@epihelp)
  • Candace Montague, Health Writer for Capital Community News in Washington, D.C. (@urbanbushwoman9)

Please follow the Epilepsy Foundation on Twitter at @EpilepsyFDN

Expert Insight

Why is communicating about SUDEP critically important?

Dr. Orrin Devinsky

"Epilepsy-related mortality should be a public health priority. There are at least 2,750 U.S. cases of SUDEP every year. In comparison, in 2013, sudden infant death syndrome (SIDS) caused 1,575 deaths, and accidental exposure to smoke, fire, and flames caused 2,760 deaths."

Orrin Devinsky, MD, Director of the New York University Langone Comprehensive Epilepsy Center

References

1. Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-31.

2. Miller WR, Young N. Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with Patients: Practices of Health-Care Providers. Epilepsy Behav. 2014 Mar: 32: 38-41. Available online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3985269/. Last accessed May 26, 2016.

Authored by: The Epilepsy Foundation SUDEP Institute on 9/2016
John Paul
Families Speak Out

"John Paul had his whole life ahead of him, full of promise, to explore and learn about the world around him and make a positive difference in the lives of others.

For those reading this, 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. Make the inquiry with your doctor; take the time to learn about this silent killer that so few doctors will initiate discussion about. In doing so, you may save a life. Our son would have wanted that."

— John Popovich, who lost his 19-year-old son John Paul to SUDEP

Read more from John Popovich.