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Genetic and Rare Diseases Information Center (GARD)

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Prader-Willi syndrome

Other Names for this Disease
  • Obesity, muscular hypotonia, mental retardation, short stature, hypogonadotropic hypogonadism, and small hands and feet
  • Prader Labhart Willi syndrome
  • PWS
  • Willi-Prader syndrome
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Your Question

For individuals with Prader Willi syndrome, how does this condition affect their lives when they get older?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is the prognosis for adults with Prader-Willi syndrome (PWS)?

The Prader-Willi Syndrome Association states that many adults with Prader-Willi syndrome (PWS) can complete school, be successfully employed, and even move away from their family home. However, adults with PWS do need a significant amount of support from their families, school, work, and residential service providers to achieve their goals and avoid the serious health consequences of obesity. Even those with IQs in the normal range need lifelong diet supervision and protection from food availability. In the past, many people with PWS died in adolescence or young adulthood due to obesity. However, the prevention of obesity can enable those with this condition to live a normal lifespan.[1] 

The Prader-Willi Syndrome Association has published "Health Care Guidelines for Individuals with Prader-Willi Syndrome," which includes recommendations for health care in adulthood. 

This association also has a publication titled "Supporting Adults with Prader-Willi Syndrome in Residential Settings - An Expert's Recommendations." You can order a copy of this manual by calling their toll-free telephone number 1-800-926-4797.
Last updated: 4/1/2011