Prader-Willi syndrome

PWS

What is Prader-Willi syndrome?

Prader-Willi is a rare genetic condition that is diagnosed soon after birth.

The condition happens by chance and causes life-long symptoms, that will need support throughout adulthood.

The condition must be carefully managed to avoid serious complications in later life, such as type 2 diabetes and heart failure.

What causes Prader-Willi syndrome?

Prader-Willi syndrome is caused by missing genes on chromosome 15, which affects hormone production in the hypothalamus.

The hypothalamus is the part of the brain that regulates how we grow and how much we eat.

What are the symptoms of Prader-Willi syndrome?

The symptoms of Prader-Willi syndrome are:

  • An uncontrollable appetite, leading to excessive weight gain
  • Restricted, or slow growth
  • Weak muscles causing floppy arms and legs
  • Learning difficulties
  • Problems with sexual development
  • Difficulty controlling emotions and behaviour

 

Are you affected by Prader-Willi syndrome?

If you’re affected by Prader-Willi syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Prader-Willi syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with Prader-Willi syndrome from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with prader-willi syndrome

We support carers, friends and family too

Are you a carer for or relative of someone with Prader-Willi syndrome? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Prader-Willi syndrome, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Counsellling at The Brain Charity in Liverpool Emotional support

Free counselling and mental health support

Struggling with your mental health? Find someone to talk to about how you're feeling at The Brain Charity.
Get help
Carer support from The Brain Charity in Liverpool Practical help

Support for carers

All The Brain Charity's services are free for carers and family members of people with neurological conditions too.
Get help
View all

Other resources

Support groups

Prader-Willi Syndrome Association UK

PWSA UK encourages those affected with Prader-Willi to join their charity.

Click here for the online membership form to join the PWSA community and meet others living with prader-willi.

Prader-Willi Syndrome Support

A group for those with lived-experience of Prader-Willi.

Click here to be part of a supportive Facebook community.

Support groups at The Brain Charity

Are you interested in setting up a prader-willi support group, or do you already run one?

Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

Prader-Willi Syndrome Association UK

Website: www.pwsa.co.uk

Phone: 01332 365 676

Email: supportteam@pwsa.co.uk

PWS Stronger Together

Website: www.pwsstrongertogether.co.uk

Email: info@pwsstrongertogether.co.uk

PWS Stronger Together does not provide a contact number, but you can find out more about how their work helps so many by visiting their Facebook page.