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What we know about the causes of SUDEP
and other epilepsy deaths and how they should be investigated.
Although, in the past, people were
told that seizures could not be fatal, about 1,000 people die
each year in the UK. This is more than the number of combined
annual deaths from cot deaths and AIDs. We do not know the number
of epilepsy deaths in other countries across the world but people
with epilepsy have an excess mortality risk of 2-3 times the
general population and the overall risk of SUDEP deaths is 1:1000
people with epilepsy per annum.
The Causes of Epilepsy-Related Deaths
are:
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SUDEP (Sudden Unexpected Death in Epilepsy) |
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Accidents e.g. drowning following a seizure |
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Status Epilepticus where there is evidence
of a seizure or series of seizures lasting more than 30
minutes |
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Suicide |
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SUDEP Deaths
This is when a person with epilepsy dies
suddenly and the post-mortem fails to establish any other cause
of death.
The majority of epilepsy-related deaths are
SUDEP. In the UK it is estimated that there are about 500-600
SUDEP deaths each year.
SUDEP is considered to be more common in
young adults, in people with epilepsy who are not seizure free
and in people who have seizures at night.
Causes
Several different mechanisms may be involved,
and there may be no single explanation for all cases. The two
primary explanations that are most likely are :
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Cardiac: If there is an electrical storm
in the brain it may spread to areas that control heartbeat.
This could cause a fatal cardiac event. |
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Respiratory: an electrical storm may spread to the part
of the brain responsible for respiration. It is known that
many people who experience seizures stop breathing for a
significant time. |
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Investigation of sudden deaths
All sudden unexpected deaths should be subject
to post-mortem to ensure that other possible causes of death
are eliminated.
One of the problems highlighted by research
is that often sudden deaths in epilepsy are not adequately investigated
and that sometimes causes are given for the death for which
there is no evidence e.g. suffocation when there is no actual
evidence of a breathing obstruction or status epilepticus when
there is no evidence that a seizure lasted more than 30 minutes.
The Royal College of Pathologists published specific guidance
on investigation of sudden deaths in people with epilepsy in
2005 and a copy of this guidance is available from Epilepsy
Bereaved or can be seen on the Royal College website –
see other sources of help.
Guidelines
on autopsy practice
Guidelines
on Autopsy Practice - best practice scenarios
In the UK there are 3 deaths
in young people each day. Each year there are estimated to be
at least 500 SUDEP deaths (Sudden Unexpected Deaths in Epilepsy);
400 SADs deaths (Sudden Arrhythmic Death Syndrome) and 300 SIDs
deaths (Sudden Infact Death Syndrome). Click below for more
information.
SUDEP
and other Sudden Deaths in the Young
Epilepsy Bereaved is advised by a
panel of epilepsy experts and specialist pathologists. We therefore
have access to information and advice to assist families understand
the cause of death.
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