I have PWS
Hello!
Welcome to the web page which is all about you!
My name is Ruth and I am the Support Team Deputy Manager here at Prader-Willi Syndrome Association UK (PWSA UK), where I have worked since 2018. I also have a very important role which is ‘Lead for Adults’.
Lots of you will already know me from Facebook, Zoom meetings and family events. For those who don’t, I hope to get to know you very soon. I am the ‘Adult Lead’ at PWSA UK. This means that I am developing the services that we offer to adults with PWS.
If you are an adult with PWS or the parent/carer of an adult, I will be here to help and support you with anything to do with PWS.
I’d love to hear from you, and I’ll be here from Monday to Thursday 9am-5pm and Fridays from 9am-1pm.
Contact me:
Email: rconsterdine@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
We have a monthly Zoom meetings for adults with PWS. They are great fun. Sometimes we do bingo and sometimes we have a quiz night. If you want to get an invitation to join in, please email us.
Every year we have community events that you can come along to:
- In the summer, we have a day out for adults and children with PWS. You can come with a family member or a carer.
- We have community weekends where you can join us from Friday to Monday with your family or carer.
- We have a Christmas or New Year party too.
- Look out for all these events on the website or on Facebook.
This is Conor
A short animated video by Emma Loudon about her cousin, Conor, who has PWS. Click on the arrow on the image below to watch the video.
Easy-read guides
Please click on the links below to read the information:
Life as an adult with PWS
- Healthy Futures pack (A guide for young people and adults with PWS)
- Supporting Adults with a Learning Disability Framework (England)
Looking after myself
- Diet and exercise
- Dietary management in PWS (questions answered by Chris Smith)
- Coping with anxiety
- Building resilience
- Get better healthcare now (Mencap guide)
- Staying safe online
- Staying safe on social media (from hacked/cloned accounts)
- Getting ready for a visit to hospital
Growing Up animations
We have produced a series of short animated videos about you will experience as you grow up, both physically and emotionally, covering important topics such as puberty, relationships, and advice on talking to people online and in person. You can watch the videos here.
Eating healthily
Lots of you have been calling us for recipe ideas. We know that you need to eat a low calorie diet and so we have included some recipe ideas in the links below:
Where can I live as an adult with PWS?
- Residential living for adults
- Experience of residential care - Toby Worrall
- Experience of supported living - John Dallas
- What can you expect from a good care home? (CQC guide)
All About Me
‘All About Me’ is a booklet where you can write down details of your routine, what makes you unique and what you feel is important for people to know about you. This can then be given to those involved in your life, such as college staff, carers and extended family members. Ask a parent or carer to help you fill this out if need be.
Let's Talk About PWS
A workbook for young people with PWS which you can download and print out.
GDPR and membership form
GDPR stands for General Data protection Regulations. This means that we need your permission to keep in touch with you and send information to you. To do this, we need you to complete this form. You can also use these forms to sign up for membership, which is free.
Fill in the form here.
