Prader-Willi Syndrome Stories

Prader-Willi Syndrome (PWS) is a complex genetic condition which is challenging for the young person with PWS and their families.  Currently, there is no cure.

Imagine the feeling of hunger all the time and you are not allowed to eat when you want to eat and whenever you like as you will become morbidly obese and could die from related health issues.

Imagine living in our society today, where food is such an integral part of our lives, celebrations and family.

Imagine, only being allowed to eat small amounts of food and not having the mental capacity to make the right choices.

This is the life of a person living with Prader-Willi Syndrome.

The result is that many people living with PWS face significant barriers to participation in employment, education and socially important activities which affect the quality of life of a person.

The appropriate housing with environmental support, health management and care significantly improves the life span and quality of life for young people and adults living with PWS.

We hope for a future where our young people and adults living with can look forward to a happier, better quality of life in an environment which supports their needs.

To read our stories: