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    Beckwith Wiedemann Syndrome

    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.

    WebMD Medical Reference from the National Organization for Rare Disorders

    Last Updated: May 28, 2015
    This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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