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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.

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Duration: 3 minutes and 18 seconds
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Language: English
License: Dotsub - Standard License
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Views: 1
Posted by: richardwh on Jan 20, 2017

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