Important
It is possible that the main title of the report Lymphedema, Hereditaryis not the name you expected.
Disorder Subdivisions
- Hereditary Lymphedema, Type I
- Congenital Hereditary Lymphedema
- Milroy Disease
- Nonne-Milroy Disease
- Lymphedema Praecox
- Lymphedema Tarda
General Discussion
Hereditary lymphedema is a genetic developmental disorder affecting the lymphatic system. It is characterized by swelling (edema) of certain parts of the body. The lymphatic system is a circulatory network of vessels, ducts, and nodes that filter and distribute certain protein-rich fluid (lymph) and blood cells throughout the body. In hereditary lymphedema, lymphatic fluid collects in the soft tissues in and under the skin (subcutaneous) due to obstruction, malformation, or underdevelopment (hypoplasia) of various lymphatic vessels. There are three forms of hereditary lymphedema: congenital hereditary lymphedema or Milroy disease; lymphedema praecox or Meige disease; and lymphedema tarda. Symptoms include swelling (lymphedema) and thickening and hardening of the skin in affected areas. In most cases, hereditary lymphedema is inherited as an autosomal dominant trait.
Lymphedema may be considered primary or secondary. Hereditary lymphedema is also known as primary lymphedema. Secondary lymphedema occurs because of damage to the lymphatic system from surgery, radiation therapy, trauma or an underlying condition.
Resources
National Lymphedema Network
Latham Square Building
1611 Telegraph Avenue
Suite 1111
Oakland, CA 94612-2138
Tel: (510)208-3200
Fax: (510)208-3110
Tel: (800)541-3259
Email: nln@lymphnet.org
Internet: http://www.lymphnet.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com
NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
Lymphovenous Canada
8 Silver Ave
Toronto
Ontario, Intl M6R 1X8
Canada
Tel: 416-533-2428
Fax: 416-539-8348
Email: info@lymphovenous-canada.ca
Internet: http://www.lymphovenous-canada.ca
Lymphatic Research Foundation
100 Forest Avenue
East Hills, NY 11548
USA
Tel: 5166259675
Fax: 5166259410
Email: lrf@lymphaticresearch.org
Internet: http://www.lymphaticresearch.org
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
National Lipedema Association, Inc.
27 Freeman Street
Arlington, MA 02474
USA
Tel: 7817340367
Fax: 7816462628
Tel: 8008092503
Email: info@lipedema.org
Internet: http://www.lipedema.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. (r) (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
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: 11/14/2008
Copyright 1986, 1987, 1989, 1990, 1994, 1999, 2006, 2008National Organization for Rare Disorders, Inc.
