About PWS

Prader-Willi Syndrome (PWS) is a complex, rare, and random genetic disorder that affects one in twelve to fifteen thousand people. First discovered in 1956 by Swiss researchers Andrea Prader, Heinrich Willi, Alexis Labhart, Andrew Ziegler and Guido Fanconi, PWS is the leading genetic cause of morbid obesity. There is no known cause or cure.

Like many syndromes, Prader-Willi presents a litany of difficult problems that may happen to varying degrees: failure-to-thrive at birth, obsessive-compulsive behavior, mild to severe mental retardation, scoliosis, strabismus, skin-picking, learning disorders, and such; but the defining characteristics of PWS are hypotonia, lifelong low muscle tone, and hyperphagia, the inability to feel sated when eating, leading to a never ending feeling of great hunger that drives those with PWS to constantly seek food, often in a most disastrous way. The results can be devastating: all the problems associated with obesity such as diabetes, heart problems, sleep apnea, plus some more extreme issues such as stealing food, eating garbage, stomach necrosis and rupture, sometimes leading to single incident fatalities.

Because it is part of their genetic make-up, people with PWS will never be able to control their relentless drive to eat, and, in an ironic twist of fate, people with PWS need substantially less food (about 40% of a normal diet) due to slow metabolism – constant hunger on a starvation diet! Many families are unable to meet the sharp need for food control, behavioural supports, and predictable routine and structure. Caregiving requires constant vigilance, 24/7 supervision, and great expense.

This is why The Richard de Lone Special Housing Project is striving to create a state-of-the-art residential center for adults and children with Prader-Willi Syndrome.

NEW SONG written by Nancy Hellman Bechtle & Steve Earle
Mayim Bialik PhD, from the hit comedy series "The Big Bang Theory"