Consensus raise awareness of Prader-Willi Syndrome throughout May

May 2, 2017

During the month of May, Consensus’ PWS services will come together with the Prader-Willi Syndrome (PWS) Association UK in raising awareness of Prader-Willi Syndrome (PWS) – a rare genetic condition which is potentially life-threatening.

With an estimated population prevalence of 1 in 54,000 being affected, PWS remains a relatively rare condition and therefore greater awareness is central to ensuring better and healthier outcomes in the future for those affected by PWS. With around 2,000 people living with PWS today, not enough people know about it.

Consensus supports over 70 adults with PWS, most of whom come from all over the UK to live with us for specialised support.

Renowned worldwide for our success in supporting people with Prader-Willi Syndrome (PWS), with all services rated ‘Good’ by the Care Quality Commission, many of the people we support and colleagues across the country will be holding events that increase awareness of Prader-Willi Syndrome, whilst raising funds for the PWSA charity.

PWS is a rare genetic condition that requires in-depth understanding and support to enable the delivery of positive outcomes to those with the condition. Consensus has been supporting people with PWS for over 35 years. Its service Parvale House, based in Kettering, was however the first service in the UK to support adults exclusively with PWS, supporting individuals since 1997.

PWS is a rare genetic condition that predominantly manifests with early years onset of hyperphagia which is an abnormal unrelenting great desire for food driving the person towards excessive eating and, left unchecked, life threatening obesity. In a nation where food is all around us and part of everything we do, people with PWS metabolise food differently, so need 40% less calories than the rest of the population.

Other characteristics of PWS include, for example, learning disabilities that may range in their severity, and challenging behaviours are a feature of PWS whether or not the person has a measured learning disability.

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