By Amber Kaiser
SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP Action Day was started as SUDEP Awareness Day on October 23, 2014 by SUDEP Action, a charity in the UK. It occurs annually on the third Wednesday of October and is now known by many people and families affected by SUDEP all over the world. 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.”
This year, SUDEP Action Day will be Wednesday, October, 18, 2023. You can get involved to help raise SUDEP awareness in a number of ways including sharing hashtag #mysafetymatters in your own social media posts, join their Facebook group and learn more about why it’s called SUDEP Action Day.
Higher SUDEP risk factors include having uncontrollable grand mal seizures as well as having seizures while sleeping. 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. Other 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 is SUDEP, about 1 in 1,000 adults and children with epilepsy die from SUDEP each year.
I recently listened to the epilepsy podcast, What the EF, about SUDEP with Dr. Kim Pargeon. In addition to having nocturnal seizures and convulsive seizures (known as grand mal seizures), and needing multiple medications, Dr. Pargeon also said other factors that could lead to SUDEP are not being monitored and living alone. If you live alone and are looking for an at-home monitoring solution for more peace of mind, be sure to check out Neureka Sleep, which tracks your heart rate, heart rate variability and blood oxygen level while sleeping and contacts your caregiver team when any of these vitals go out of a “normal” range.
If you have lost a loved one from SUDEP, you may be surprised 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 to raise SUDEP awareness by simply talking about it with your friends or family. If you or anyone you know has epilepsy, you may also consider these SUDEP and seizure safety checklists by Epilepsy Alliance America.
Like a lot of families who have lost a loved one from SUDEP and created foundations or organizations, our team at Neureka co-founded the SUDEP Data Alliance with Briya after losing a friend, Robin, to SUDEP. We felt first hand the devastating impact that SUDEP leaves behind for families and loved ones. Learn more about the Alliance and how you, or your organization or business can get involved in our mission.
I hope this was helpful to you and thank you for reading this as you are raising awareness about epilepsy and SUDEP! Although SUDEP can naturally be difficult to talk about, most people wish they were at least aware of it as a realistic possibility of living with epilepsy—because it is.