Beckwith Wiedemann Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Beckwith Wiedemann 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

  • Beckwith-Syndrome
  • BWS
  • EMG Syndrome
  • Exomphalos-Macroglossia-Gigantism Syndrome
  • Hypoglycemia with Macroglossia
  • Macroglossia-Omphalocele-Visceromegaly Syndrome
  • Omphalocele-Visceromegaly-Macroglossia Syndrome
  • Visceromegaly-Umbilical Hernia-Macroglossia Syndrome
  • Wiedmann-Beckwith Syndrome

Disorder Subdivisions

  • None

General Discussion

Beckwith-Wiedemann syndrome (BWS) is a rare genetic overgrowth disorder. It is characterized by a wide spectrum of symptoms and physical findings that vary in range and severity from case to case. However, in many individuals, associated features include above-average birth and weight and increased growth after birth (postnatally), an usually large tongue (macroglossia), enlargement of certain internal organs (visceromegaly), and protrusion of a portion of the intestines and abdominal organs through a tear in the wall of the stomach or bellybutton (abdominal wall defects). BWS may also be associated with low blood sugar levels within the first few days or the first month of life (neonatal hypoglycemia), advanced bone age, particularly up to age four; distinctive grooves in the ear lobes and other facial abnormalities, abnormal enlargement of one side or structure of the body (hemihyperplasia) may occur, resulting in unequal (asymmetric) growth, and an increased risk of developing certain childhood cancers.

In approximately 85 percent of cases, BWS results from genetic changes that appear to occur randomly (sporadically). Approximately 10-15 percent of cases of this syndrome run in families and show autosomal dominant inheritance. Researchers have determined that BWS results from various abnormalities affecting the proper expression or structure of certain genes within a specific region of chromosome 11.

Resources

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

The Arc
1825 K Street NW, Suite 1200
Washington, DC 20006
Tel: (202)534-3700
Fax: (202)534-3731
Tel: (800)433-5255
TDD: (817)277-0553
Email: info@thearc.org
Internet: http://www.thearc.org

American Childhood Cancer Organization
10920 Connecticut Ave
Suite A
Kensington, MD 20895
Tel: (301)962-3520
Fax: (301)962-3521
Tel: (800)366-2223
Email: staff@acco.org
Internet: http://www.candlelighters.org

National Cancer Institute Physician Data Query
Office of Communications and Education
Public Inquiries Office
6116 Executive Blvd
Suite 300
Bethesda, MD 20892-8322
Tel: (800)422-6237
Email: cancergovstaff@mail.nih.gov
Internet: http://www.cancer.gov/cancertopics/pdq/cancerdatabase

National Cancer Institute
6116 Executive Blvd Suite 300
Bethesda, MD 20892-8322
USA
Tel: (301)435-3848
Tel: (800)422-6237
TDD: (800)332-8615
Email: cancergovstaff@mail.nih.gov
Internet: http://www.cancer.gov

Neuroblastoma Children's Cancer Society
P.O. Box 957672
Hoffman Estates, IL 60195
USA
Tel: (847)605-1245
Fax: (847)605-0705
Tel: (800)532-5162
Email: Info@neurblastomacancer.org
Internet: http://www.neuroblastomacancer.org

Childhood Cancer Canada Foundation
21 St. Clair Avenue East, Suite 801
Toronto
Ontario, M4T 1L9
Canada
Tel: 4164896440
Fax: 4164899812
Tel: 8003631062
Email: info@childhoodcancer.ca
Internet: http://www.childhoodcancer.ca

OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
2 Donner
Philadelphia, PA 19104-4283
USA
Tel: (215)349-8895
Fax: (215)349-5445
Email: hampshire@uphs.upenn.edu
Internet: http://www.oncolink.upenn.edu

CureSearch for Children's Cancer
4600 East West Highway, Suite 600
Bethesda, MD 20814-3457
USA
Tel: (626)447-1674
Fax: (626)447-6359
Tel: (800)458-6223
Email: info@curesearch.org
Internet: http://www.curesearch.org

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/

Beckwith-Wiedemann Family Forum
105 Yehudah St. Apt 2
Modi'in, 71700
Israel
Tel: 01197289714544
Email: julie@netor.co.il
Internet: http://www.beckwith-wiedemann.info/

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
Internet: http://rarediseases.info.nih.gov/GARD/

Beckwith-Wiedemann Children's Foundation
9031 Cascadia Ave
Everett, WA 98208
Tel: (425)338-4610
Fax: (425)357-8575
Email: BWCFKathy@comcast.net
Internet: http://www.beckwith-wiedemannsyndrome.org

Hemihypertrophy Support
4581 Magnolia Dr.
Suffolk, VA 23435
Tel: (757)615-3686
Email: hemihypertrophy@yahoogroups.com
Internet: http://www.hemisupport.com

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

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:  8/7/2007
Copyright  1985, 1988, 1989, 1990, 1993, 1994, 1997, 1999, 2000, 2002, 2007 National Organization for Rare Disorders, Inc.

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