Prader Willi Syndrome

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Prader Willi Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Prader Willi Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • Cryptorchidism-Dwarfism-Subnormal Mentality
  • HHHO
  • Hypogenital Dystrophy with Diabetic Tendency
  • Hypotonia-Hypomentia-Hypogonadism-Obesity Syndrome
  • Labhart-Willi Syndrome
  • Prader-Labhart-Willi Fancone Syndrome
  • Willi-Prader Syndrome

Disorder Subdivisions

  • None

General Discussion

Prader-Willi syndrome (PWS) is a genetic disorder characterized by 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.

Resources

Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Suite 500
Sarasota, FL 34238
USA
Tel: (941)312-0400
Fax: (941)312-0142
Tel: (800)926-4797
Email: webmaster1@pwsausa.org
Internet: http://www.pwsausa.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Prader-Willi Syndrome Association (UK)
125A London Rd
Derby, Intl DE1 2QQ
United Kingdom
Tel: 01332 365676
Fax: 01332 360401
Email: admin@pwsa.co.uk
Internet: http://www.pwsa.co.uk

NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
MSC2425
Bethesda, MD 20892
Fax: (866)760-5947
Tel: (800)370-2943
TDD: (888)320-6942
Email: NICHDInformationResourceCenter@mail.nih.gov
Internet: http://www.nichd.nih.gov/

Prader-Willi France
10 Rue Charles Clement
Mondrepuis, Intl F02500
France
Tel: 33 323 98 79 04
Fax: 33 323 98 79 04
Email: jean-yves.belliard@wanadoo.fr
Internet: http://www.perso.wanadoo.fr/pwillifr

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Internet: http://rarediseases.info.nih.gov/GARD

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Foundation for Prader-Willi Research
5455 Wilshire Blvd
Suite 2020
Los Angeles, CA 90036
Tel: (760)536-3027
Fax: (888)559-4105
Email: tthoet@fpwr.org
Internet: http://www.fpwr.org

International Prader Willi Syndrome Organization
c/o Baschirotto Institute for Rare Diseases (BIRD)
Via Bartolomeo Bizio, 1
36023 Costozza (VI),
Italy
Tel: +39 0444 555557
Fax: +39 0444 555557
Email: g.fornas@alice.it
Internet: http://www.ipwso.org

Medical Home Portal
Dept. of Pediatrics
University of Utah
P.O. Box 581289
Salt Lake City, UT 84158
Tel: (801)587-9978
Fax: (801)581-3899
Email: mindy.tueller@utah.edu
Internet: http://www.medicalhomeportal.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  5/5/2009
Copyright  1984, 1985, 1987, 1988, 1989, 1992, 1994, 1996, 1997, 1998, 1999, 2000, 2002, 2004, 2005, 2009 National Organization for Rare Disorders, Inc.

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