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

Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring, MD 20910
Tel: (301)565-3842
Fax: (301)565-3843
Tel: (800)433-5255
TDD: (817)277-0553
Email: info@thearc.org
Internet: http://www.thearc.org/

Candlelighters Childhood Cancer Foundation
P.O. Box 498
Kensington, MD 20895-0498
Tel: (301)962-3520
Fax: (301)962-3521
Tel: (800)366-2223
Email: staff@candlelighters,org
Internet: http://www.candlelighters.org

National Cancer Institute Physician Data Query (PDQ) Cancer Information Service
9000 Rockville Pike
Bethesda, MD 20892
Tel: (800)422-6237
Internet: http://www.cancernet.nci.nih.gov/pdq.html

National Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda, MD 20892-8322
USA
Tel: (301)435-3848
Tel: (800)422-6237
TDD: (800)332-8615
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 Foundation - Candlelighters Canada
1300 Yonge St , Suite #405
Toronto, Ontario, Intl M4T 1X3
Canada
Tel: (416) 489-6440
Fax: (416) 489-9812
Tel: (800) 363-1062
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)349-5445
Fax: (215)349-5445
Email: editors@oncolink.upenn.edu
Internet: http://www.oncolink.upenn.edu

National Childhood Cancer Foundation
440 E. Huntington Drive, Suite 400
Arcadia, CA 91006-3776
USA
Tel: (626)447-1674
Fax: (626)447-6359
Tel: (800)458-6223
Email: nccf-info@nccf.org
Internet: http://www.nccf.org/nccf/

NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
MSC2425
Bethesda, MD 20892
Tel: (301)496-5133
Fax: (301)496-7101
Internet: http://www.nichd.nih.gov/

Beckwith-Wiedemann Family Forum
105 Yehudah St. Apt 2
Modi'in, Intl 71700
Israel
Tel: 011 972-8-971-4544
Email: julie@netor.co.il
Internet: http://www.beckwith-wiedemann.info/

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: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Beckwith-Wiedemann Children's Foundation
9031 Cascadia Ave
Everett, WA 98208
Tel: (425)338-4610
Fax: (425)357-8575
Email: thefoundation@beckwith-wiedemannsyndrome.org
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

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

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