3246R.GP Who are SUDEP Action and what do they do
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We always refer to SUDEP as a sudden unexplained death in epilepsy
as the silent killer.
So our perfectly healthy little boy had gone from being perfectly healthy
to being dead 4 days later,
to a condition that nobody knows about and as parents we didn't know
about it.
And in that time that Charlie was put to bed on the 11th of October
And Jan and coming downstairs, we watched a little bit of the news
and we went back up the stairs to bed, it was about 45 minutes
and in that time, Charlie had had his second seizure, it was a fatal seizure.
We heard absolutely nothing downstairs and we call that now
the silent killer.
We found that the only SUDEP charity in the uk was a charity
called SUDEP action.
SUDEP kills more
than 3 people a day
and to put that into
perspective for people,
Asthma kills 3 people
on average a day.
The numbers that we're talking about with SUDEP deaths, kill more than
cot deaths and aids
combined in this country.
They have worked worked with us very closely, not only with the
bereavement side but also
with our charity work
and they do a lot of research and development into the epilepsy related
deaths within the uk
and the rest of the world.
They do some fantastic
information leaflets.
For anyone watching this today who has lost a loved one
to SUDEP or an epilepsy
related death
please can I ask that you go onto the SUDEP action site and take the time
to log the death onto the epilepsy death register.
That's any death that was SUDEP
(Sudden Unexplained
Death in Epilepsy)
or an epilepsy related death.
SUDEP action are collating all the information from deaths that each
and every one of us are
taking the time to log.
While recently SUDEP action have developed a
While recently SUDEP action have developed a phone app, the app is
called the EpSMon which is the Epilepsy Self-Monitor.
It's just a self monitoring
way to keep your own record
of how well your
progressing and if nothing else
then for just general information.
Just pick up a leaflet.
www.sudep.org can give you
all the information you need.