11.6.2013 Huntingtons Disease Awareness Week

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This week is Huntington's Disease Awareness Week in Ireland and the UK.

Siobhan and Frankie, a couple affected by the condition, gave an interview to RTE's morning edition programme. Together with Niall Pender, Head of Psychology, Beaumont Hospital, they illustrated the devastating impact of Huntingtons disease on the entire family and called for better services.

Frankie spoke about his symptoms and the impact on his life while Siobhan discusses the worry of knowing each of their young children has a 50% chance of carrying the mutated HD gene.

Dr Pender spoke of Huntingtons being a "devastating global progressive degenerative disease" with up to 750 people in Ireland having the condition and a further 2500 at risk. He describes services as inadequate. Other countries throughout the world have integrated multidisciplinary clinics to manage symptoms and support those at risk yet there are no HD clinics in Ireland to date. Beaumont Hospital are trying to establish such a clinic but in the current economic climate this is proving very difficult.

You can view the interview in full at http://www.rte.ie/player/ie/show/10155966/

 

 
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