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.

PWS Journey

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

General information about PWS, including genetics and characteristics

Information for families

Information for professionals