New diagnosis

Support for new parents

A diagnosis of PWS can feel overwhelming, but please be reassured that there is hope for the future and support available for you and your child.

As a first step, we have created this pack, to give you some information about Prader-Willi Syndrome and the support your child should receive.

If you don't feel ready to look at lots of information you can read each separately:

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"A couple of months ago, Alice took her first steps..."

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"Zoe can charm a room full of strangers and has a wonderful sense of humour..."

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"They brought Elodie over to meet me and she was such a perfect, tiny, dinky dot! A very quiet dot..."

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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 experiences of having a baby with PWS.

Meet Sheila...

I'm Sheila Inwards, PWSA's new diagnosis lead. I support familes who've just received a diagnosis of Prader-Willi Syndrome.

Firstly, congratulations on the birth of your baby. I have a son with PWS and know the news can be a shock.

As well as coming to terms with your feelings, you will probably have lots of questions about the future and your next steps.

I am here to answer all your questions, provide practical help and professional advice, once you feel ready to speak to someone.

Support we can offer:

Arrange a visit online or in person to answer your questions and talk through anything
Put you in touch with other families in your area
Refer you to specialist PWS services
Tell you about the medical, practical and financial support available for PWS
Provide a listening ear who understands PWS

Email: supportteam@pwsa.co.uk

Phone: 01332 365676

Please remember, you are not alone, there is a whole community out there waiting to greet and support you.

Join as a member to receive tailored support on your PWS journey

Joining as a member will enable us to support you in the best possible way, by giving you advice tailored to the relevant stage of your PWS journey, before you know you need it! This means we can make sure you're equipped with the best and most up to date information, so you can make informed decisions and get the right support in place at every step.

As a member, you will join a special community at the heart of everything we do. Your lived experience of Prader-Willi syndrome will influence our work and help us 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.

Hattie has come a long way...