How does Prader-Willi Syndrome Impact Lives?

Prader Willi syndrome not only impacts those with the disorder, but also impacts the lives of the family and community that must raise and support the individual with PWS. Prader-Willi syndrome is a life-long condition and currently there is no cure; thus, the impact of PWS also is life-long.

Families must radically change behavior to accommodate the needs of the individual with PWS, including diet, daily routine and schedule. The sacrifices are not trivial, and PWS has been known to cause undue stress on the parents and caretakers of those with the syndrome.

The hunger, metabolic, and behavioral characteristics of PWS force individuals with the syndrome to require constant and lifelong supervision in a controlled environment. Moreover, families must be constant educators since everyone who interacts with individuals with PWS must be aware and supportive of their limitations, restrictions, and needs.

Due to these restrictions, independence for individuals with PWS is a distant dream today, but one that the Foundation for Prader-Willi Research expects to realize with your support.  The FPWR firmly believes that research is the best means for giving people with PWS hope for an independent future.

Are you a parent or family member of an individual who recently has received a diagnosis of Prader-Willi syndrome? If so, please click here to read a Message of Hope from our Executive Director.