What is Prader Willi-Syndrome?

Friends with PWS in the New England area gather for the first annual PWSA New England walkathon!

PWS is a non-inherited genetic disorder which is most often associated with a random deletion of the 15th chromosome. It is estimated that PWS occurs in 1 in 10,000 births. It affects both sexes and is unrelated to race. The cause is, as yet, unknown.

PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is circa 70, but even those with normal IQs almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.

Next PWSA New England Chapter Meeting

Member's who attended the PWSA National Conference in Orlando this past November will be presenting on the sessions they attended. This is a great opportunity to learn new information about PWS.

Franciscan Hospital for Children
30 Warren St.
Brighton, Ma, 02135

Click here for Directions.