New diagnosis

Hello!

My name is Sheila and I am the new diagnosis lead for PWSA UK.

Firstly, congratulations on the birth of your baby. I have a son with PWS and know the news can be a shock. The important thing to remember is you are not alone, there is a whole community out there waiting to greet and support you.

Many of you will be visiting this page following a new diagnosis and may be feeling overwhelmed, not only with the news but with what to expect, and you will be looking for guidance as to your next steps.

This is a journey we can do together. If you are ready to contact me or if any family or friends want to, I am here Monday to Thursday from 9am to 5pm, and Fridays by phone from 9am to 1pm.

Contact me:

Email: sinwards@pwsa.co.uk

Phone: 01332 365676

Post: Prader-Willi Syndrome Association UK

c/o Metcalf’s Commercial Decorators

3 Deer Park Road

Moulton Park

Northampton

NN3 6RX

Our babies, our stories

A diagnosis of PWS will understandably be a daunting prospect for any parent, but there are many joys to having a child with PWS. Here, parents from our wonderful community share their own individual and unique stories.

Simply click on the photos below to read their stories:

Case study: Being a grandparent of someone with PWS

New Diagnosis Pack

As a first step, to help you and introduce you to PWS, we have put together a New Diagnosis Pack which you can download from here

or contact us for a hard copy. This pack gives you background on PWS, an idea of what to expect and the various support networks that we can offer you.

If you do not feel ready to look at lots of information you can download the individual sheets:

Why not become a member of PWSA UK? As a member, you will join a special community at the heart of everything we do. Use your lived experience of Prader-Willi syndrome to influence our work and develop our plans. It's free to join, there is no set time commitment, and your membership does not expire. Find out more and sign up here.

Please remember the internet can be useful but can also tell you unhelpful and sometimes distressing things which are not factual. If you want to read all about PWS, use this website (pwsa.co.uk), or our closed Facebook group, PWSA UK Community Hub.