Prader-Willi Syndrome: Quality of Life

Prader-Willi Syndrome: Quality of Life takes a comprehensive look at PWS throughout the lifespan. It considers quality of life from the perspectives of those with PWS, their parents, care-givers, and support workers. It is based on a 22 year follow up with 51 families, interview with 25 younger families, review of 40 additional case files, examination of Canadian media reports, and a search of the international literature. The author writes from a psycho-socio-educational perspective, examining the whole person in the context of home, school and community settings, and within commonly understood life domains. Hope is found in the current best practices such as individualized programming, supported independence, and community living. Personal and family stories illustrate the range and variability within the syndrome and the uniqueness of individual circumstances. Readers will be encouraged by the improvements in supports and services in recent years. They will be reassured by the personal accounts and photographs illustrating daily life with PWS. They will read of heartaches and successes, and find hope in new perspectives and possibilities