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"Resources" on this report.
Copyright 1986, 1987, 1989, 1990, 1994, 1999, 2006, 2008
NORD is very grateful to Joseph L. Feldman, MD, Assistant Professor, Physical Medicine & Rehabilitation Medical Director, Lymphedema Treatment Center, NorthShore University HealthSystem , for assistance in the preparation of this report.
Synonyms of Lymphedema, Hereditary
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
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Lymphatic Research Foundation
40 Garvies Point Road
Glen Cove NY 11542
Phone #: 516-625-9675
800 #: --
e-mail: lrf@lymphaticresearch.org
Home page: http://www.lymphaticresearch.org
- Lymphovenous Canada
8 Silver Ave
Toronto
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 #: 914-997-4488
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
1611 Telegraph Avenue
Suite 1111
Oakland CA 94612-2138
Phone #: 510-208-3200
800 #: 800-541-3259
e-mail: nln@lymphnet.org
Home page: http://www.lymphnet.org
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