July 1, 2009
SUDEP (Sudden Unexplained Death in Epilepsy) is a sudden occurrence of death during the course of normal activity in a person with epilepsy, and in the absence of other medical explanations. While SUDEP is thought to be uncommon in the United States, it is not tracked, monitored or researched in America. As a result, there is no reliable data on the incidence of SUDEP in the US. In countries such as the UK where SUDEP has been tracked and investigated for at least the past 10 years, studies indicate that among people with epilepsy who have risk factors for SUDEP, the incidence could be as high as 1 in 100 people.
SUDEP is defined by the following criteria:
? The person has epilepsy, defined as recurrent unprovoked seizures.
? The person died unexpectedly while in a reasonable state of health.
? The death occurred suddenly (e.g. within minutes).
? The death occurred during normal and benign circumstances.
? An obvious medical cause of death could not be determined at autopsy.
? The death was not caused by a seizure
SUDEP Risk factors may include:
? Intractable seizures (seizures that are difficult control, despite treatment with antiepileptic drugs)
? Generalized tonic-clonic seizures (e.g. grand mal seizures)
? Nocturnal seizures (e.g. seizures that occur during sleep)
? Treatment with multiple antiepileptic drugs
? Not taking antiepilepsy medication as prescribed
? Developmental delays
? Sleep deprivation
? Drug and alcohol abuse
As part of the SUDEP Task Force, the Bursick family is striving to get people with epilepsy, their families and their doctors to talk about SUDEP. These risk factors should be discussed with your or your loved one?s physician to determine the level of risk that you may be facing.
Please take the time to talk with your or your loved one?s doctors regarding SUDEP.
If you or your loved one has risk factors for SUDEP, you should also discuss the following additional measures you can take to try and lower the risk:
1. Sleep/night monitoring
2. Breathing monitor/alarm
3. Defibrillator in the room (all adults who live in the house must know how to use it)
4. Knowledge of CPR (Cardiopulmonary Resuscitation)
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