Family Life

Having a son or daughter with PWS usually means that family life can be different to other families, sometimes around meal-planning and managing behaviour. However, this doesn't necessarily mean big changes, and often positive strategies and boundaries can be very helpful.

As your son or daughter 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.

Family Life

• Caring for yourself and other family members (PDF)

• Birth - 5 years (PDF)

• 5-13 years (PDF)

• 13-18 years (PDF)

• Grandparents (PDF)

• Information for Brothers and Sisters (PDF)

• Telling your child about PWS (PDF)

• Let's Talk About PWS - a workbook about Prader-Willi syndrome for families with children and young people (PDF)

• Growing Up animations - a series of short animations aimed at young people and adults with PWS, explaining the physical and emotional changes they will experience as they grow up.

• Making a Will and setting up a Trust (PDF)

• Recording from Zoom session on Wills and Trusts (YouTube video)

Please note that if you wish to get in touch with Sophie Townsend, who hosts this session, please contact us at admin@pwsa.co.uk .

• Coming To Terms With Diagnosis (PDF)

• Government Allowances (PDF)