Prader-Willi Syndrome

Prader-Willi Syndrome

(PWS) is the most common known genetic cause of life-threatening obesity in children.  Although the cause is complex it results from an abnormality on the 15th chromosome.  Approximately one in 10,000 babies are born with PWS and it occurs in males and females equally and in all races.

PWS typically causes low muscle tone, short stature if not treated with growth hormones, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories that normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later.  The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.  There is no known cure or treatment for PWS.

The Prader-Willi Syndrome Association

The Prader-Willi Syndrome Association, PWSA (USA), was organized in 1975 and provides a resource for education and information about Prader-Willi Syndrome. They provide life-time advocacy for affected individuals. Visit their website.

A note from the Levine and Wilkinson Families

Our purpose is to raise funds for research so that we can find a cure and effective treatment for Prader-Willi Syndrome, a non-inherited and potentially life threatening genetic disorder. It is a life-long condition that affects appetite, growth, metabolism, cognitive function and behavior. By participating in our golf classic you become our partner in securing a good life for Josi, Harold and others with PWS. The more you do, the more we can do.

Thank you for helping. It’s about our children, what more can we say?

 

Your hosts,

Ronnie and Ira Levine
Jill and Harold Wilkinson