SUDEP Awareness Day

Today was the first SUDEP Awareness Day.  That is, Sudden Unexplained Death in Epilepsy.  Death is one of those things that people in the epilepsy community don’t like to talk about.  For decades, it has been hidden. 

For a long time, the focus has been on managing epilepsy.  A cure did not seem to be possible, so the highest goal that researchers and doctors aimed for was limiting the number of seizures and side effects as best they could.  Now, researchers are doing innovative studies to get to the root of the causes of the different epilepsies that exist.  Instead of treating the symptoms of epilepsy, they are looking for a permanent cure.

However, until that miracle cure comes, we still have to deal with death in epilepsy.  Every year, about one in 1000 people with epilepsy will die for no obvious cause.  This is SUDEP.  Although the risk is low, it is something to be concerned about.  Anyone can get SUDEP, but there are those who are more susceptible to it.  They are people with:

·         Generalized tonic-clonic (grand mal) seizures

·         Seizures during sleep

·         Seizures lasting a long time (status epilepticus)

·         Seizures in a cluster

In order to reduce your risk of SUDEP, do the following:

·         Minimize your seizures

·         Avoid seizure triggers (e.g., flashing lights, lack of sleep, alcohol, illegal drugs (which you shouldn’t be doing anyway), missed medications)

·         Take medications regularly

·         Keep all your doctor’s appointments

·         Discuss your treatment options

·         Ask all questions you may have about your treatment

The following link takes you to some very valuable flyers about SUDEP and epilepsy.

https://www.sudep.org/leaflets-and-downloadable-information

I hope as awareness grows and treatments become available, the number of deaths as a result of Sudden Death in Epilepsy becomes a thing of the past.

Special thanks to SUDEP Action for these valuable resources.