40+ Years
Previously it was thought that people with PWS would not live much past their early middle age, but there are now a significant number we know of who are in their 40s and 50s, and a few in their 60s. The oldest person we know of lived to be 74 years old. However, our knowledge of how PWS affects people in their later years is quite limited because very little research has been done in this area, and the number of people in this age group remains comparatively small.
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.
If you would like to talk to someone about any aspect of the information available below then our support team can be reached on 01332 365676, or email supportteam@pwsa.co.uk.
Dietary Management
Download PDFBehaviour Management
Download PDFHealth Care
Download PDFResidential Care and Supported Living
Download PDFSocial Life and Relationships
Download PDFWork and Training
Download PDFAgeing in PWS
Download PDFInformation for GPs
Download PDFInformation for Hospital and A&E Staff
Download PDF
CONTACT
Postal correspondence address:
Prader-Willi Syndrome Association UK
C/O Metcalf’s Commercial Decorators
3 Deer Park Road
Moulton Park
Northampton
NN3 6RX
Phone: +44 (0)1332 365676
Email: admin@pwsa.co.uk
Registered Charity No. 1155846
