SUDEP stands for sudden unexpected death in epilepsy. It is a rare but fatal complication of epilepsy with no other known cause of death.
While the exact cause of SUDEP is unknown, there are ways you can lower your risk factors and incorporate SUDEP awareness as part of a healthy lifestyle. Empowering yourself or a loved one to take proactive steps is essential.
The most common risk factors of SUDEP include:
- Uncontrolled or frequent seizures
- Tonic-clonic seizures (previously referred to as “grand mal seizures”)
- Generalized compulsive seizures
- The age of seizure onset and number of years the individual has had epilepsy
- Medication compliance
- Sleep deprivation
- History of drug or alcohol use
We understand that this can be a very difficult thing to think about and conversation to have with both your loved ones, but awareness is key to Stop SUDEP occurring.
It is important to discuss SUDEP with your healthcare team as part of your overall epilepsy care and management plan, even if it is not something they bring up. As it can happen at any age, it is especially important to discuss during the transition phases of your journey, including college, group homes, independent living, healthcare sitters. Talking about it with your close family members and friends is also beneficial to increase awareness and decrease risk to the to your loved one.
There are efforts underway to improve SUDEP awareness and research and many resources available to help better understand this topic. More resources can be found at: