Diseases & Conditions


A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Lymphedema, Hereditary


Synonyms of Lymphedema, Hereditary
  • Primary Lymphedema

Disorder Subdivisions

  • Congenital Hereditary Lymphedema
  • Hereditary Lymphedema, Type I
  • Lymphedema Praecox
  • Lymphedema Tarda
  • Milroy Disease
  • Nonne-Milroy Disease


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.

Organizations related to Lymphedema, Hereditary
  • Lymphatic Research Foundation
    100 Forest Avenue
    East Hills NY 11548
    Phone #: 516-625-9675
    800 #: --
    e-mail: lrf@lymphaticresearch.org
    Home page: http://www.lymphaticresearch.org
  • Lymphovenous Canada
    8 Silver Ave
    Ontario Intl M6R 1X8
    Phone #: 416--53-3-2428
    800 #: N/A
    e-mail: info@lymphovenous-canada.ca
    Home page: http://www.lymphovenous-canada.ca
  • 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: mums@netnet.net
    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: Askus@marchofdimes.com
    Home page: http://www.marchofdimes.com
  • NIH/National Heart, Lung and Blood Institute Information Center
    P.O. Box 30105
    Bethesda MD 20824-0105
    Phone #: 301-592-8573
    800 #: --
    e-mail: nhlbiinfo@rover.nhlbi.nih.gov
    Home page: N/A
  • National Lipedema Association, Inc.
    27 Freeman Street
    Arlington MA 02474
    Phone #: 781-734-0367
    800 #: 800-809-2503
    e-mail: info@lipedema.org
    Home page: http://www.lipedema.org
  • National Lymphedema Network
    Latham Square Building
    Oakland CA 94612-2138
    Phone #: 510-208-3200
    800 #: 800-541-3259
    e-mail: nln@lymphnet.org
    Home page: http://www.lymphnet.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