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We are Raising funds for Prader-willi research to find a cure
Rock for a Cure
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. It occurs in males
and females equally and in all races. Prevalence estimates have ranged
from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000.
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 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 for
gestation, 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.
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