National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Hereditary Lymphedema is not the name you expected.
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 subcutaneous tissues under the epidermis 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 classified as 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 infection (e.g. filariasis).
Lipedema is a symmetrical accumulation of subcutaneous fat, most often in the legs. Lipedema occurs almost exclusively in females. Tenderness and bruising are also common. Typically, the feet are not swollen and thickening of the skin of the toes (Stemmer's sign). Lipedema is frequently misdiagnosed as lymphedema.
Canadian Lymphedema Framework
- 4800 Dundas Street W
- Suite 204
- Toronto, Ontario, M9A 1B1
- Tel: (1) 647-693-1083
- Email: firstname.lastname@example.org
- Website: http://canadalymph.ca/
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
- Website: http://rarediseases.info.nih.gov/GARD/
Lymphatic Education & Research Network
- 261 Madison Avenue
- 9th Floor
- New York, NY 10016
- Tel: 516-625-9675
- Fax: 516-625-9410
- Email: LERN@LymphaticNetwork.org
- Website: http://www.lymphaticnetwork.org
March of Dimes
- 1275 Mamaroneck Avenue
- White Plains, NY 10605
- Tel: (914)997-4488
- Fax: (914)997-4763
- Email: AskUs@marchofdimes.org or email@example.com
- Website: http://www.marchofdimes.org and nacersano.org
NIH/National Heart, Lung and Blood Institute
- P.O. Box 30105
- Bethesda, MD 20892-0105
- Tel: (301)592-8573
- Fax: (301)251-1223
- Email: firstname.lastname@example.org
- Website: http://www.nhlbi.nih.gov/
National Lymphedema Network, Inc.
- 2288 Fulton Street
- Suite 307
- Berkeley, CA 94704
- Tel: 510-809-1660
- Fax: 510-809-1699
- Tel: 800-541-3259
- Email: email@example.com
- Website: http://www.lymphnet.org
Vascular Disease Foundation
- 550 M Ritchie Highway
- Severna Park, MD 21146
- Tel: (443)261-5564
- Tel: (888)833-4463
- Email: firstname.lastname@example.org or email@example.com
- Website: http://www.vdf.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.
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.
Last Updated: 5/20/2015
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