Epilepsy & SUDEP

What is Epilepsy?

Epilepsy is a condition of the nervous system causing seizures and it currently affects over 3 million people in the United States and 26 million people worldwide. 1 in 26 Americans will experience epilepsy at some point in their lives.

More than 500 new cases of epilepsy are diagnosed every day, and it is estimated that up to 50,000 Americans die from seizures and seizure related causes every year – although most don’t even realize they are at risk.

What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150.

It is CHF's belief that SUDEP monitors are life saving. We have heard stories from countless families who believe their child's life was saved because they were alarmed - something we didn't have the opportunity to do.

SUDEP is what it sounds like – sudden unexplained death in epilepsy. SUDEP usually (but not always) occurs during seizure, but is not apparently caused by seizure. SUDEP usually occurs during normal activity (like sleep), often in an otherwise healthy individual with no risk of death from his or her condition.

Currently, the cause of SUDEP is not known, although it is the cause up to 20% of deaths in epileptic individuals, and over one-third of deaths among epileptic children. SUDEP often affects those who are otherwise at low risk for death from their condition. Although there is little awareness of SUDEP, even among individuals with epilepsy and their families, it is still the leading epilepsy-related cause of death, well above accidents resulting from an epileptic seizure, and preventive measures can be taken. The lack of education both about SUDEP amongst those directly affected by epilepsy, and about epilepsy in general within the greater community, can result in tragic incidents that could often preventable with the right awareness.

The person with epilepsy is often found dead in bed and doesn’t appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. Paying attention to managing your seizure medications as best as possible, taking them regularly, and preventing seizures emergencies is all part of this. Learn how to get the best care and decrease your risk for SUDEP.

First and foremost, individuals and families must know about this condition in order to potentially prevent it. Informing families and raising awareness within the community not only helps to prevent individual instances, but also encourages research into the phenomenon as well as encourages the sharing of information and requests for medical support to become more informed and involved.

Once aware that SUDEP is a possibility, trained seizure-response dogs can alert family members or others nearby to the onset of a seizure, so that early intervention can be made and all possible precautions taken to get the individual safely through the seizure.

Monitoring devices such as Emfit, SAMi ™ and SmartWatch monitors provide a similar warning to enable an immediate response when an individual experiences a seizure.

Finally, creating a community of individuals with epilepsy and those who love them to support each other and to act as ambassadors to the community at large will help to raise compassion, curiosity and awareness of SUDEP so that it may be prevented in individual cases as well as studied to learn more about how it works and other possible courses of prevention.