A child and a baby with prader-willi syndrome lying on their fronts smiling. The baby has a naso-gastric tube covered by a teddy bear plaster.

New diagnosis

Support for new parents

A diagnosis of PWS can feel overwhelming, but please be reassured that things are not as bleak as they seem. There is hope for the future and support available for you and your child.

As a first step, we have created this new diagnosis pack, to give you some information about Prader-Willi Syndrome, an idea of what to expect and the support and care your child should receive.



Download New Diagnosis Pack

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:

Hello!

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 I can offer:

  • Arrange a home visit 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 

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.


Email: sinwards@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 hear news about PWS first

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.

New Diagnosis

Hattie has come a long way...