Last week, it happened again. One of our Empowering Epilepsy Community Members, who was also an old college friend of mine, passed away. I was devastated reading the post by a family member announcing her death on her social media page. Since Empowering Epilepsy began in 2014, she is now the 13th person we have helped to try and live well, and then lost due to epilepsy and seizures.
When I attended the wake, her family didn’t know much about her epilepsy diagnosis. They hadn’t talked to her much, and not surprisingly, she didn’t want to share her epilepsy diagnosis with them. She wanted to stay in control and not have people in her life think she was losing control. So does almost everyone living with uncontrolled seizures. When I asked them how she died, they told me “She fell.”
While I don’t want to scare people, it is a fact: epilepsy and seizures can kill.
We lose people with epilepsy due to a variety of reasons:
Accidents
Drowning
Fatal injury during a seizure
Status Epilepticus Seizures - Seizures that last longer than 5 minutes
Suicide - 22% of people with epilepsy are more likely to die by suicide than the general population
SUDEP
Today marks an international day called SUDEP Action Day. SUDEP stands for Sudden Unexpected Death in Epilepsy.
SUDEP refers to when an otherwise healthy person with epilepsy dies, and there is no connection to any other cause of death, such as accident, illness, injury or drowning. The person is usually found lying face down in their bed.
Over 30 years ago, a former boyfriend of mine, who also had epilepsy, passed away. His parents were out of the country and called the police to do a well check to make sure he wass OK.. He was found lying face down in his bed. The cause of death listed by the coroner was “Unknown, a possible heart condition.” Even though he lived with Generalized Tonic Clonic Seizures, and was taking prescribed anti-seizure medications,, there was no connection to epilepsy made in his cause of death due to how he was found. Back then, they didn't even consider SUDEP a cause of death. Now they do, but it is not used as often as it should be.
We need to change this conversation. SUDEP, similar to SIDS - Sudden Infant Death Syndrome, happens often, and community education is provided often to prevent SIDS. Coroners and Medical Examiners need to learn more about this cause of death.
Yet, families who lose loved ones with epilepsy to SUDEP are usually left without answers. They don’t understand what they could have done wrong to cause this loss, or what they could have done to save them. I promise they did nothing wrong.
A huge goal of Empowering Epilepsy’s is to reduce SUDEP deaths in our epilepsy community. To do this, we provide ongoing epilepsy education in a variety of ways:
through our Age Based Virtual Support Groups
Conferences - including our SUDEP Action Day Talk
Individual conversations with families
Education for people with epilepsy, their loved ones, companies and organizations, and the general community.
Teaching people and their loved ones how to better manage their seizures, and the proactive strategies they can take to empower their lives is our main goal.That is the only way we know to reduce the risk of death in epilepsy.
We hope you can join our SUDEP Action Day Talk this Thursday, October 19, 2023, and our Empower Your Life Conference this Saturday, October 21, 2023. By joining and learning more, you can literally save someone’s life! https://www.empoweringepilepsy.org/sudepa-ction-day-talk
Please check out the Sudden Unexpected Death in Epilepsy page on our website by clicking here to learn more. https://www.empoweringepilepsy.org/learn-sudden-unexplained-death-due-epilepsy
