Facebook Live on SUDEP: Knowledge is Power

Join us on Thursday, August 1, 2019, at 7:00 p.m. ET.

Epilepsy affects each person and their family differently. One thing remains the same for everyone – wanting to understand the diagnosis, treatment and risks. One risk important to be aware of is known as sudden unexpected death in epilepsy, known as SUDEP. The cause of SUDEP is not known, but it often occurs during or right after a seizure. This is why learning how to stay healthy, work to control your seizures, and reduce your risk is important.

Join Patty Osborne Shafer RN, MN; Jeff Buchhalter MD, PhD; and Sally Schaeffer to talk about SUDEP. Find out

• What is SUDEP?
• How common is SUDEP?
• Who is at risk for SUDEP?
• How can I reduce my risk?
• Should I talk to my doctor about SUDEP?
• How can an epilepsy specialist or epilepsy center help me?
• Should I or my child be monitored during sleep if seizures occur at night?
• Where can I get support if I have lost a loved one to SUDEP?

Moderator

 

Patty Osborne Shafer RN, MN
Senior Director, Epilepsy Foundation
Biography

Guests

 

Jeff Buchhalter MD, PhD

Jeffrey Buchhalter MD, PhD, is an adjunct professor of pediatrics at the University of Calgary and former director of the pediatric epilepsy program at Alberta Children’s Hospital, Phoenix Children’s Hospital and the Mayo Clinic, Rochester. He is a current member of the Big Data Task Force of the International League Against Epilepsy. His current research program involves informatics approaches to improving outcomes for children with epilepsy via structured electronic health records. Dr. Buchhalter is the Quality Adviser for the Epilepsy Learning Healthcare System network, a multi-site, quality improvement-based project, and he leads the Pediatric Epilepsy core of this project. He participates on the American Academy of Neurology Coding (ICD-10) sub-committee and was a member of the task forces that produced practice guidelines for the Vagus Nerve Stimulator and SUDEP. He recently co-led the group that created the first Quality Measures for Child Neurology.

 

Sally Schaeffer

Sally Schaeffer is the senior director of the Epilepsy Foundation’s SUDEP Institute after spending many years in corporate health care. Sally is a mother of three with one child, Lydia, born with a rare chromosome disorder. Lydia developed epilepsy at a young age and at age 6 was diagnosed with a rare, subclinical epilepsy. Sadly, and unfortunately, Lydia died in her sleep on Mother’s Day 2014 from SUDEP. Sally has always been a fierce advocate in the medical and educational realm to raise awareness of rare disorders and epilepsy. Motivated and inspired after Lydia’s passing, Sally has brought her advocacy to the SUDEP Institute where she educates various audiences on SUDEP, grief and loss.  To learn more about Sally and Lydia, visit endepilepsy.org and look for her video and story under “Fighter” in the ambassador section.

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Note: presenters cannot address individual medical concerns and cannot provide individual advice.