Diseases & Conditions


Beckwith Wiedemann Syndrome

Synonyms of Beckwith Wiedemann Syndrome
  • 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

    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.

    Organizations related to Beckwith Wiedemann Syndrome
    • Beckwith-Wiedemann Children's Foundation
      9031 Cascadia Ave
      Everett WA 98208
      Phone #: 425-338-4610
      800 #: N/A
      e-mail: [email protected]
      Home page: http://www.beckwith-wiedemannsyndrome.org
    • Beckwith-Wiedemann Family Forum
      105 Yehudah St. Apt 2
      Modi'in Intl 71700
      Phone #: 011- 97-2-8-971-4544
      800 #: --
      e-mail: [email protected]
      Home page: http://www.beckwith-wiedemann.info/
    • Candlelighters Childhood Cancer Foundation
      P.O. Box 498
      Kensington MD 20895-0498
      Phone #: 301-962-3520
      800 #: 800-366-2223
      e-mail: [email protected],org
      Home page: http://www.candlelighters.org
    • Childhood Cancer Foundation - Candlelighters Canada
      55 Eglinton Avenue East
      Toronto, Ontario Intl M4P 1G8
      Phone #: 416-489-6440
      800 #: 800-363-1062
      e-mail: [email protected]
      Home page: http://www.childhoodcancer.ca
    • HemiHypertrophy Support
      4581 Magnolia Dr.
      Suffolk VA 23435
      Phone #: 757-271-9000
      800 #: N/A
      e-mail: [email protected]
      Home page: http://www.hemisupport.com
    • MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
      150 Custer Court
      Green Bay WI 54301-1243
      Phone #: 920-336-5333
      800 #: 877-336-5333
      e-mail: [email protected]
      Home page: http://www.netnet.net/mums/
    • March of Dimes Birth Defects Foundation
      1275 Mamaroneck Avenue
      White Plains NY 10605
      Phone #: 914-428-7100
      800 #: 888-663-4637
      e-mail: [email protected]
      Home page: http://www.marchofdimes.com
    • NIH/National Institute of Child Health and Human Development
      31 Center Dr
      Bethesda MD 20892
      Phone #: 301-496-5133
      800 #: --
      e-mail: N/A
      Home page: http://www.nichd.nih.gov/
    • National Cancer Institute
      6116 Executive Blvd, MSC 8322, Room 3036A
      Bethesda MD 20892-8322
      Phone #: 301-435-3848
      800 #: 800-422-6237
      e-mail: N/A
      Home page: http://www.cancer.gov
    • National Cancer Institute Physician Data Query (PDQ) Cancer Information Service
      9000 Rockville Pike
      Bethesda MD 20892
      Phone #: --
      800 #: 800-422-6237
      e-mail: N/A
      Home page: http://www.cancernet.nci.nih.gov/pdq.html
    • National Childhood Cancer Foundation
      PO Box 60012
      Arcadia CA 91066-6012
      Phone #: 626-447-1674
      800 #: 800-458-6223
      e-mail: [email protected]
      Home page: http://www.nccf.org/nccf/
    • Neuroblastoma Children's Cancer Society
      P.O. Box 957672
      Hoffman Estates IL 60195
      Phone #: 847-605-1245
      800 #: 800-532-5162
      e-mail: [email protected]
      Home page: http://www.neuroblastomacancer.org
    • OncoLink: The University of Pennsylvania Cancer Center Resource
      3400 Spruce Street
      Philadelphia PA 19104-4283
      Phone #: 215-349-5445
      800 #: --
      e-mail: [email protected]
      Home page: http://www.oncolink.upenn.edu
    • The Arc (a national organization on mental retardation)
      1010 Wayne Ave
      Silver Spring MD 20910
      Phone #: 301-565-3842
      800 #: 800-433-5255
      e-mail: [email protected]
      Home page: http://www.thearc.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