Living with Prader Willi Syndrome

Dietary management

When caring for individuals with PWS we generally create food plans based on 1300 calories each day. We do not talk about ‘diets’ as most individuals with the syndrome have heard this all their lives and are sick of the word.

We work on a principle of healthy eating. As well as keeping a careful eye on the calories consumed we also take create care to source fresh ingredients, prepare the food well and make sure the individuals we care for receive a balanced and varied diet.

We would be happy to discuss this in more detail with any interested party on request.

PWS and Employment

At Craegmoor we aim to support everyone to achieve their goals and ambitions. Most people with PWS are fully capable of working, be that paid or voluntary, and are really keen to contribute to their communities.

With the right environmental boundaries in place, working can be a great way for an individual with PWS to develop skills to help them in areas such as cognition, perception and overall learning. We have built up connections over the past ten years with local employers who offer work experience placements for our service users:

DVS

This media centre, on one of the large industrial estates in St. Leonards has been offering work experience placements to our service users since 2009. This is a busy open plan work environment where the service users help with mail-outs etc.

Bausch + Lomb

Bausch + Lomb are a well-known healthcare company.

They offered one of our service users a work experience placement in their very busy site in St Leonards. This new placement has brought much enjoyment to the individual who attends. The experience of travelling to and from the work placement has enhanced the individual’s independence and he is made to feel part of the team by the staff at Bausch + Lomb.

Drallim

Drallim is a large engineering company in Hastings and has kindly been offering work experience to the people who live at our PWS homes since 2010. The work is varied, and this is another provision which is enjoyed by all who attend.

Support from PWS Groups

We understand that people caring for someone with PWS can feel quite isolated, as they often don’t have anyone amongst their family and friends who understand the condition in depth.

That’s why we have an active PWS Facebook group dedicated to offering advice and support for parents and carers on all areas of PWS, from dietary management to managing behaviours. This group is a great place for parents of children with PWS to share their stories, ask for help and receive advice off those in similar situations.

There are also a number of organisations and support groups throughout the UK and internationally which provide support for people with PWS and their families; for example the Prader Willi Syndrome Association UK, which has a wide range of free downloadable information sheets on living with, and managing, PWS.

Living with PWS can be challenging, but there is always support available should you need it. For more information on how Craegmoor can support you or someone you care about, contact us today on 0800 840 3219.