Having a child or adult with PWS usually means that family life is somewhat different to other families, most notably around meal-planning and managing behaviour. However, depending on circumstances, this does not necessarily mean big changes, and introducing positive structures and boundaries can be very helpful.

As the child grows to adulthood, family life usually begins to extend more and more to community life, and interactions with non-family members may need careful management. Additionally, once a child leaves school, there is a strong likelihood of social services involvement, if this has not already been accessed by the family.

The following links are sections from the PWS Journey.  Families can obtain a hard copy of the whole PWS Journey,  which is updated as their child reaches the next age range, by becoming a member of PWSA UK

Information for Brothers and Sisters

Grandparents     Birth to 2 years         2 -5 years         5-10 years

Coming to terms with the diagnosis    Birth to 2 years      2-5 years

Caring for yourself and other family members  Birth to 2 years      2-5 years      5-10 years       10-13 years     13-18 years

Telling your child about PWS  5 – 10 years       10-13 years

Social life and relationships  13 – 18 years

Further education and options after school 13 – 18 years

Making a will and setting up a trust

Benefits and Services

Click here for information about government benefits, sources of financial help and other useful agencies

PWS Passport

The PWS Passport can be used to inform others working with or caring for your son or daughter about their needs - you can adapt it to fit your personal circumstances.

You can download it here

PWSA UK Publications

Our Babies – a booklet with stories from parents of children with PWS sharing their experience of having a diagnosis of PWS - PWSA UK Publication
Let’s Talk about PWS – an interactive workbook for children and adults with PWS explaining in basic language how the syndrome affects them. Explores themes such as diet, exercise, speech, routines and feelings.

Please click here to go to our publications page

Information for teachers

You may find the following links useful to give to your son or daughter’s teacher for educational support staff.

Information for nursery school staff

Information for primary school staff

Information for secondary school staff

Information for college staff

PWS Awareness Card

The PWS Awareness Card is a wallet sized card which can be used in various situations such as restaurants or when out and about to make members of the public aware of the issues that the person with PWS in your family may have.

You can download it here  

If you would like a hard copy, please contact us

Contact us

If you have a question about family life which is not answered in the links provided, please contact us.