New SUDEP Resources for Families in English and Spanish

Every year, more than 1 in 1,000 people with epilepsy die from sudden unexpected death in epilepsy (SUDEP). The risk of SUDEP is much higher for people with uncontrolled epilepsy, seizures at night, and for those with tonic- clonic seizures. Despite the seriousness of SUDEP, a 2016 survey revealed that 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. There is an ongoing need to educate on SUDEP prevention both in and outside the doctor’s office.

Building on Partnerships

The Epilepsy Foundation's SUDEP Institute, Danny Did Foundation, Child Neurology Foundation, two leading pediatric epileptologists (neurologist that specialize in epilepsy), and Digital Health Solutions LLC recently collaborated to create education materials on SUDEP, as well as seizure action plans. The materials are in both English and Spanish.

“The Epilepsy Foundation’s SUDEP Institute was very pleased to partner with two respected, leading organizations like Danny Did and Child Neurology Foundation,” said Sally Schaeffer, director of the SUDEP Institute.

Resources for Families

All the materials are available and will be adapted to work with the Child Neurology Foundation’s Child Health Improvement through Computer Automation (CHICA)^®. CHICA will be a high-tech tool that automatically generates SUDEP risk screenings during visits with a primary care provider.

The developed resources include:

• Understanding Your Child’s Risk for SUDEP: Low Risk for SUDEP* (Español)
• Understanding Your Child’s Risk for SUDEP: High Risk for SUDEP* (Español)
• Seizure Action Plan (Fillable)(Español)
• School Seizure Action Plan (Fillable)(Español)

*Please speak with your neurologist or epileptologist to determine whether the low risk or high risk SUDEP information sheet is best for you.

More information on SUDEP:

• How SUDEP Occurs
• SUDEP FAQ
• Preventing SUDEP
• Resources for Professionals