Information and Resources

Font Size

Lymphedema, Hereditary

Important
It is possible that the main title of the report Lymphedema, Hereditaryis not the name you expected.

Synonyms

Primary Lymphedema

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
800: (800)541-3259
nln@lymphnet.org
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
800: (888)663-4637
Askus@marchofdimes.com
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
nhlbiinfo@rover.nhlbi.nih.govLymphovenous Canada
8 Silver Ave
Toronto
Ontario
Intl
M6R 1X8
Canada
Tel: 416-533-2428
Fax: 416-539-8348
info@lymphovenous-canada.ca
http://www.lymphovenous-canada.ca

Lymphatic Research Foundation
100 Forest Avenue
East Hills
NY
11548
USA
Tel: (516)625-9675
Fax: (516)625-9410
lrf@lymphaticresearch.org
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: (920)336-5333
Fax: (920)339-0995
800: (877)336-5333
mums@netnet.net
http://www.netnet.net/mums/

National Lipedema Association, Inc.
27 Freeman Street
Arlington
MA
02474
USA
Tel: (781)734-0367
Fax: (781)646-2628
800: (800)809-2503
info@lipedema.org
http://www.lipedema.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

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: 2/14/2009
Copyright 1986, 1987, 1989, 1990, 1994, 1999, 2006, 2008 National Organization for Rare Disorders, Inc.

WebMD Medical Reference from the National Organization of Rare Disorders

Last Updated: February 14, 2009

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.