Talking about SUDEP

Recently we are hearing a lot about SUDEP, also called unexplained death in epilepsy. This is an important topic that’s been around for a long time, but people were afraid to talk about it. Health care professionals didn’t want to scare people with epilepsy or their families, and we all wanted to think that epilepsy was not a ‘big deal’. People minimized the risks of dying from epilepsy, which may have felt better to some people temporarily, but didn’t help others, especially those who had lost a family member to epilepsy.

The epilepsy community has turned a huge corner. People have realized that it’s time to talk about what epilepsy really is and what the risks may be for some people. It’s time to talk about the risks of dying from epilepsy, and the unknown force known as SUDEP. This honest talk can help people know what they are living with, learn ways to prevent or lessen risks, and most importantly, not be misinformed.

A few things to think about and do:

• Talking about death in epilepsy is scary and it’s okay to be scared! Fear is a natural emotion that’s better talked about with someone. When we suppress fear, it can turn into more serious or long-lasting emotional problems.
• If this is the first time you’ve heard about death and epilepsy, talk to someone and learn the facts! Don’t keep it to yourself and worry.
• SUDEP is rare and most people are at very low risk. However, if you have epilepsy, or a loved one does, learning about your risks can help you manage your seizures and life better.

You’ll see new information about SUDEP over the next several months. As you read it, if you have questions or other ideas you’d like information on, please contact us.

Most importantly, print out the information to talk to your doctor about. It may help you start the conversation and learn what information pertains to you and what doesn’t.

I hope everyone is having a safe week!