Talking About SUDEP

Description

Do you know what Sudden Unexpected Death in Epilepsy (SUDEP) is?

Who may be at risk?

Talking about early death in epilepsy, particularly SUDEP, is hard for everyone.

  • It is scary and no one wants to hear about what can go wrong or if a person can die.
  • The numbers show it is rare – 1 in 4,500 children and 1 in 1,000 adults with epilepsy may die each year from SUDEP. But even 1 death is too many.
  • There is still so much we don’t know about what causes SUDEP. It’s hard to know who is at risk and when to talk about it.

But we MUST talk about SUDEP!

  • Not letting people know their risks or what they can do is not okay.
  • Waiting until after it has happened is not okay.

Talking about SUDEP is a critical part of epilepsy care. Everyone should know what it is, and what it is now. Only by talking about it can people learn their risks and take action to improve seizure control, and ideally lessen their risks of SUDEP.

 

Upon completing the course, participants will be able to:

Understanding risks for SUDEP and steps that may be taken to reduce the risk for seizures and SUDEP.

Presenters

Daniel Friedman, MD
NYU Langone Epilepsy Center, Epilepsy Foundation SUDEP Editor, member of PAB  and SUDEP Institute.

Family Perspective Presenters:
Arleen Read and Cheryl Nygaard, Leigh Ann Brecheisen

Thoughts from a person with epilepsy:
Wendy Miller, PhD, RN, CCRN, Indiana University School of Nursing, member of Epilepsy Foundation PAB.

Approximate Length our Course: 59 minutes

Related Links:

About SUDEP

SUDEP FAQs

Support for Bereaved

SUDEP Resources

Talking About SUDEP

The Role of Seizure Alerts (about smart watches, mattress devices, apps, etc.)

Aim For Zero

Aim For Zero Social Media Guide (to help people join the NEAM campaign)

About the SUDEP Institute

SUDEP Challenge Initiative (challenge to find a biomarker to predict SUDEP, #AimForZero came out of the first challenge)

Online Bereavement Support Group

Donate to support the SUDEP Institute

Talk About It! page on SUDEP

SUCCESSFUL
Average score: 0%
Progress: 0%