Sudden Unexplained Death in Epilepsy (SUDEP)
At Epilepsy Australia we have, since 1997, actively worked to communicate awareness of sudden unexpected death in epilepsy in a practical and non-alarmist way. And we continue to do so.
If you have suffered a bereavement due to SUDEP, Epilepsy Australia has experienced counsellors who can help at this time.
What is SUDEP?
SUDEP is sudden unexpected death in someone with epilepsy, who was otherwise well, and in whom no other cause of death can be found, despite thorough post mortem examination and blood tests. This does not include those who die in status epilepticus and those who die from a seizure-related accident.
In general, the risk of SUDEP for an adult with epilepsy is low, at one in 1,000 persons over a one-year period. For persons with poorly controlled seizures the risk is one in 100 persons over one year. In children, SUDEP is an even rarer occurrence with the risk as low as one in 4,500 over one year.
To date we do not know what causes SUDEP. Current research leads to respiratory or cardiac dysfunction, but the cause of this dysfunction still eludes us and we cannot know who will be affected.
However, over the years some possible risk factors have been suggested including:
Yet risk factors only tell part of the story. Sometimes individuals with infrequent seizures pass away, while others with more frequent and apparently more severe seizures do not. Some may be more at risk because of social factors, lifestyle or sub-optimal management; others may have additional biological susceptibility.
People with epilepsy can take a very positive approach to reducing risk by making seizure freedom a high priority. Good control of seizures is often achieved quite simply by taking the medication prescribed, at the correct dose on a regular basis.
It is generally agreed that seizure frequency is the factor most strongly associated with an increased risk of SUDEP, and that the unknown category of seizure frequency, that where seizure frequency is not known or disclosed, showed the strongest association with risk of SUDEP of all seizure-frequency groups.
Life is precious, and while the risk of SUDEP is low, all factors that may lead to injury or loss of life should be included in any risk management discussion. Informed decisions about treatment and lifestyle can only be made if all the information is provided and consequences discussed.
SUDEP Action are a UK based organisation focused on providing information on SUDEP and sponsoring research to prevent further deaths. SUDEP Action also manage the international Epilepsy Death Register which gathers information about epilepsy-related deaths so that more can be learned and risks can be reduced. If you have lost a loved one you may want to consider sharing information in the Epilepsy Death Register.
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