What is SUDEP Action Day?

SUDEP stands for Sudden Unexpected Death in Epilepsy. It was started as SUDEP Awareness Day on October 23, 2014 by SUDEP Action , an epilepsy charity in the UK. It occurs annually on the third Wednesday of October and is now known all over the world by people and families affected by epilepsy and SUDEP.

SUDEP Action's mission for SUDEP Action Day is to “shine a light on the largest cause of death in people with epilepsy, helping empower people through increased awareness, research and taking action to reduce epilepsy and SUDEP risks.”

SUDEP Action Day 2024

This year, SUDEP Action Day is Wednesday, October, 16, 2024. You can get involved to help raise SUDEP awareness by sharing the 2024 campaign hashtag #OurRisksOurRights in your own social media posts, joining their Facebook group and learning more about why it’s called SUDEP Action Day.

SUDEP Action chose the #OurRiskOurRights campaign because "every person living with epilepsy has a right to be told about the risks that come with the condition--as well as a right to early diagnosis and access to information, medication and care."

SUDEP Risk Factors

Epilepsy Foundation says SUDEP risk factors include having uncontrollable grand mal (convulsive) seizures as well as having seizures while sleeping (nocturnal seizures). Nocturnal grand mal seizures are the highest risk for SUDEP, and missed medications, or not taking your medication as prescribed, can also be a SUDEP risk since it could lead to more seizures or even breakthrough seizures.

According to the Center for Disease Control (CDC) , SUDEP causes include seizures that start at a young age, many years of living with epilepsy and drinking alcohol. If you are wondering how common SUDEP is, about 1 in 1,000 adults and children with epilepsy die from SUDEP each year.

In the epilepsy podcast, What the EF , I listened to a show called "The Breakdown on SUDEP with Dr. Kim Pargeon." In addition to having nocturnal seizures and convulsive seizures and needing multiple medications, Dr. Pargeon also said other factors that could lead to SUDEP are not being monitored and living alone.

SUDEP Support and Resources

If you have lost a loved one from SUDEP, you may be surprised and comforted to learn that there are a lot of people who can relate. Many families have actually created foundations in honor of their loved ones including the Jon Shaw Foundation in the UK, the Chelsea Hutchison Foundation and the Danny Did Foundation . You can also read SUDEP stories shared by SUDEP Action and consider helping raise SUDEP awareness by talking about it with your friends and family. If you or anyone you know has epilepsy, you may also consider these SUDEP and seizure safety checklists by Epilepsy Alliance America and Early Death & SUDEP education by Epilepsy Foundation .

Written and edited by Amber Kaiser and originally published on the Neureka blog