MP calls for research to prevent epilepsy deaths ?>

MP calls for research to prevent epilepsy deaths

Nia Griffith MP has lent her support to the campaign to prevent deaths from epilepsy. There are 3 seizure-related deaths a day in the UK and most of these are sudden and unexpected (SUDEP). Over 50 people in Wales die each year from epilepsy.Exactly what causes Sudden Unexpected Death in Epilepsy is unknown. Epilepsy Bereaved is a national charity dedicated to the prevention of SUDEP and other epilepsy related deaths and supports people bereaved by epilepsy.

MP Nia Griffith attended a meeting in parliament organised by Epilepsy Bereaved earlier this year and spoke up recently in a debate on epilepsy.

Nia said; Although we have made huge progress in the field of epilepsy care, research into the condition is still very much underfunded; there is a need to make research into epilepsy deaths an urgent priority, so that we can gain some of the knowledge that could prevent some of the future deaths from epilepsy.

I know families in my constituency, who have lost a loved one to epilepsy and I am well aware of how devastating this can be to the family and the community.  I will do all I can to help raise the profile of epilepsy related deaths in parliament.  Epilepsy Bereaved is asking for MPs to sign up to a national statement on SUDEP and I will certainly be putting my name to that. More must be done to prevent those deaths which could potentially be avoided”.

Llanelli residents Peter and Eva Kelly lost their 36 year old son Sam who died from epilepsy in November 2010. The family were devastated when Sam died and have called for greater understanding about the risks associated with epilepsy.

“ Sam grew up with the love, support from his younger brother and sister. There is no doubt that having them helped enormously in the development of Sammy becoming a well balanced and wonderful human being, accepted and respected by so many, not just within our family, but in school and our wider circle of friends.

 He learned to live with the occasional seizure and totally accepted his various disabilities.  He gained a black belt in Tae Kwon Do and had a go at many other sports-activities. He also passed the European licence in computing, had his own facebook page, which we have kept open in his memory. He loved travelling and got himself a part-time job at his local Morrisons as a sales-assistant.

Our son in law Matthew and his father work with the company Burts Chips and they have dedicated their new, Aberdeen Angus crisps to raising awareness of SUDEP in support of Epilepsy Bereaved.  It’s a fantastic way to help the charity in memory of our Sammy”.

Epilepsy Bereaved communications manager Fiona McDonald is based in Llanelli.  She said “The outlook for most people with epilepsy is very good. Evidence suggests that with a clear understanding of epilepsy and good management of seizures, the risk of SUDEP can be minimized.  We are very grateful to Nia for her support in helping us to raise awareness and prevent these unnecessary deaths from epilepsy”.

If you are concerned about SUDEP or have been bereaved by epilepsy please contact Epilepsy Bereaved by phone on 01554778450, by email via fiona@eb-team.org.uk or through their website www.sudep.org

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