Knowledge Is EmPOWERing
What You Need to Know About Sudden Unexpected Death in Epilepsy (SUDEP)
At EPI, we believe that knowledge is empowering – and we strive to advance public awareness and understanding of SUDEP through education. In addition to explaining what SUDEP is, the various sections in this web site provide helpful “Frequently Asked Questions” to foster proactive communication between healthcare providers and families affected by seizures, as well as valuable first aid tips and information about seizure detection devices. The goal is to elevate awareness of, and access to, technologies that enable early intervention and added safety when a seizure occurs.
EPI strongly recommends that everyone with epilepsy talk to their neurologist about SUDEP. The information presented here is general SUDEP information.
Frequently Asked Questions about SUDEP
If you’re the parent of or caregiver for a person with epilepsy, you are often faced with many decisions to make – and finding ways to help your loved one live the fullest life possible can be overwhelming. When meeting with your doctor, be sure to ask him or her to discuss the risk of SUDEP with you. It may also be helpful to have someone accompany you to your appointment – and be sure to take notes.
Following are some “Frequently Asked Questions and Answers” to help start the conversation with your healthcare provider:
Be Seizure Safe
Seizures, treatments and other health problems carry risks for many people with epilepsy. Learning to lessen these risks is a critical part of living safely with seizures. Always be sure that family members, caretakers and co-workers follow basic first aid tips for helping someone who is having a seizure, such as:
- Ease the person to the floor
- Turn the individual gently onto one side to help him or her breathe easier
- Clear the area around the person of anything hard or sharp to minimize injury
- Put something soft and flat, like a folded jacket, under his or her head
- Remove any eyeglasses and loosen ties or anything around the neck that may restrict breathing
- Call 911 if the seizure lasts longer than 5 minutes
NYS recently passed a law that requires information be provided to patients & health care practitioners about SUDEP. Read the Natasha Gembka SUDEP Awareness Act here:
Talk to your or your child’s doctor, then download these handouts from the Child Neurology Foundation for next steps.
An additional resource from CNF is a newly released Preventing Epilepsy Deaths Toolkit that provides information for both clinicians and families.
For more information or if you have any questions, please contact:
Education Coordinator/Camp Director
Phone: (585) 442-4430 ext. 2741