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Lymphatic Malformations

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Lymphatic Malformations 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

  • cavernous lymphangioma
  • cystic hygroma
  • cystic lymphangioma
  • lymphangioma circumscriptum
  • lymphangioma
  • lymphangiomatosis
  • macrocystic lymphatic malformation
  • microcystic lymphatic malformation

Disorder Subdivisions

  • None

General Discussion

Lymphatic malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. These malformations are usually apparent at birth or by two years of age. Lymphatic malformations can affect any area of the body (except the brain), but most commonly affect the head and neck. When evident at birth (congenital), lymphatic malformations tend to be soft, spongy, non-tender masses. The specific symptoms and severity of lymphatic malformations varies based upon the size and specific location of the malformation. Some lymphatic malformations can be massive. Lymphatic malformations regardless of size can potentially cause functional impairment of nearby structures or organs and disfigurement of affected areas.

The lymphatic system functions as part of the immune system and helps to protect the body against infection and disease. It consists of a network of tubular channels (lymph vessels) that transport a thin watery fluid known as lymph from different areas of the body into the bloodstream. Lymph accumulates between tissue cells and contains proteins, fats, and certain white blood cells known as lymphocytes. As lymph moves through the lymphatic system, it passes through a network of lymph nodes that help the body to deactivate sources of infection (e.g., viruses, bacteria, etc.) and inflammation (e.g. antigens). Groups of lymph nodes are located throughout the body, including in the neck, under the arms (axillae), at the elbows, and in the chest, abdomen, and groin. The lymphatic system includes the spleen, which filters worn-out red blood cells and produces lymphocytes, and bone marrow, which is the spongy tissue inside the cavities of bones that manufactures blood cells.

Several different terms were once used to describe conditions now grouped under the umbrella term "lymphatic malformations". Such terms include cystic hygroma, lymphangioma, cavernous lymphangioma, cystic lymphangioma, and lymphangioma circumscriptum. These terms have been abandoned because some of the outdated terms imply a relationship to cancer. Lymphatic malformations are not cancerous and there is no known risk of malignant transformation.

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

Contact A Family
209-211 City Road
London, EC1V 1JN
United Kingdom
Tel: 02076088700
Fax: 02076088701
Tel: 08088083555
Email: info@cafamily.org.uk
Internet: http://www.cafamily.org.uk/

Cystic Hygroma and Lymphangioma Support Group
United Kingdom
Tel: 02086729259
Email: darrenbowler1@gmail.com or corinne321@hotmail.co.uk
Internet: http://www.chalsg.org.uk/

Vascular Birthmarks Foundation
P.O. Box 106
Latham, NY 12110
USA
Tel: (877)823-4646
Email: hvbf@aol.com
Internet: http://www.birthmark.org

Lymphovenous Canada
8 Silver Ave
Toronto
Ontario, M6R 1X8
Canada
Tel: 4165332428
Email: info@lymphovenous-canada.ca
Internet: http://www.lymphovenous-canada.ca

Lymphatic Research Foundation
40 Garvies Point Road
Glen Cove, NY 11542
USA
Tel: (516)625-9675
Fax: (516)625-9410
Email: lrf@lymphaticresearch.org
Internet: http://www.lymphaticresearch.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
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
Internet: http://rarediseases.info.nih.gov/GARD/

National Organization of Vascular Anomalies
PO Box 38216
Greensboro, NC 27438-8216
Email: admin@mail.novanews.org
Internet: http://www.novanews.org

Lymphangiomatosis & Gorham's Disease Alliance
19919 Villa Lante Place
Boca Raton, FL 33434
Tel: (561)441-9766
Email: info@lgdalliance.org
Internet: http://www.lgdalliance.org/

Venous Disease Coalition
1075 S. Yukon Street, Suite 320
Suite 320
Lakewood, CO 80226
Tel: (303)989-0500
Fax: (303)989-0200
Tel: (888)833-4463
Email: info@venousdiseasecoalition.org
Internet: http://www.venousdiseasecoalition.org

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:  6/7/2011
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