An organization of families and professionals working together to enhance the life of those affected by Prader-Willi syndrome
Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.
Prader-Willi syndrome (PWS) is a complex non-hereditary birth defect resulting from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. It occurs in from 1 in 12,000 to 1 in 15,000 births.
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.
1. Prader-Willi syndrome is a complex disorder imposing special challenges on families.
2. Families of children with PWS should have access to crisis counseling and assistance
3. Health insurance should cover growth hormone for those with PWS
4. Parents should have assistance in advocating for their children with PWS
5. Research into PWS can help fight obesity in the general population.
PRADER-WILLI SYNDROME ASSOCIATION
a 501(c)(3) nonprofit (EIN: 41-1306908)