What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.

Iowa SUDEP Ambassador

Hello, my name is Jennifer Sime. I live in Decorah, IA  and am a mother of four children, a wife and a nurse. I became involved with the Epilepsy Foundation of Iowa, after the death of my son Brendan on November 28, 2017.  Brendan was diagnosed with epilepsy when he was 10 yrs old. His 4th grade teacher noticed that he was staring off in class, and because she had a daughter who had epilepsy, she knew that this was not attention disorder or boredom, but rather absence seizures. Three months later Brendan had his first tonic-clonic seizure and that catapulted us into seeking further answers and treatment. It took about 6 months to find the right medication to control Brendan’s seizures, and with that came a very normal life for Brendan with only a few breakthrough seizures over the next 9 years. Brendan was 19 years old and had just started his freshman year at Iowa State, when he died from Sudden Unexpected Death in Epilepsy or SUDEP.  We had never heard of SUDEP, or that Brendan could be at risk for this. In the days and months following Brendan’s death, I have looked for ways to help bring awareness to epilepsy and SUDEP and I am honored to partner with the Epilepsy Foundation of Iowa as their SUDEP Ambassador. I look forward to connecting with and supporting families all across Iowa who have been impacted by SUDEP, or any loss related to epilepsy.

 

Remembrance Wall

We have created a Virtual SUDEP Remembrance Wall to remember, honor, and celebrate those we have lost in Iowa to SUDEP or a seizure related death. To submit words of remembrance and a picture of your loved one, please send an email to Iowa@efa.org or call 515- 259-8528 to get the google form link. Our Virtual SUDEP Remembrance Wall is viewable on our website here and on our Facebook page here.

What does the SUDEP Institute do?

The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people bereaved by SUDEP and other epilepsy-related deaths. Click here to learn more about the SUDEP Institute Program. 

Support for the Bereaved

Losing someone you love to epilepsy either from SUDEP or some other cause is devastating and heart breaking.  However, the SUDEP Institute wants to be there for you to help support you in your loss, which includes free bereavement support to family and caregivers.  Please see more information on our support mechanisms here.

Learn more about SUDEP

People who continue to have seizures are at greater risk of a number of complications, which is why preventing seizures is so important.  The biggest risk of seizures are injuries and sadly, death.  This website provides information around this loss.

University of Iowa SUDEP Research Program

The UIHC SUDEP research program seeks to understand the underlying causes of this tragic outcome in order to prevent it, is associated with the UIHC Epilepsy subspecialty clinic and is part of the NINDS initiative called The Center for SUDEP Research, a Center Without Walls for Collaborative Research in the Epilepsies. Please see their website about key members, what epilepsy is and who is leading the fight to help those suffering.