Skip to content

Information and Resources

Font Size

Hereditary Lymphedema

Important
It is possible that the main title of the report Hereditary Lymphedema is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • primary lymphedema

Disorder Subdivisions

  • congenital hereditary lymphedema
  • hereditary lymphedema, type I
  • lymphedema praecox
  • lymphedema tarda
  • Milroy disease
  • Nonne-Milroy disease
  • lymphedema-distichiasis

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 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 alsocommon. Lipedema is frequently misdiagnosed as lymphedema.

Resources

National Lymphedema Network
116 New Montgomery Street
Suite 235
San Francisco, CA 94105
Tel: (415)908-3681
Fax: (415)908-3813
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)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
Internet: http://www.nhlbi.nih.gov/

Lymphovenous Canada
8 Silver Ave
Toronto
Ontario, M6R 1X8
Canada
Tel: 4165332428
Email: info@lymphovenous-canada.ca
Internet: http://www.lymphovenous-canada.ca

Vascular Disease Foundation
1075 S. Yukon Street
Suite 320
Lakewood, CO 80226
Tel: (303)989-0500
Fax: (303)989-0200
Tel: (888)833-4463
Email: info@vdf.org
Internet: http://www.vdf.org

Lymphatic Research Foundation
40 Garvies Point Road
Glen Cove, NY 11542
USA
Tel: (516)625-9675
Fax: (516)625-9410
Email: lrf@lymphaticresearch.org
Internet: http://www.lymphaticresearch.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

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
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

For a Complete Report:

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, 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. 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:  6/28/2012
Copyright  1986, 1987, 1989, 1990, 1994, 1999, 2006, 2008, 2012 National Organization for Rare Disorders, Inc.

WebMD Medical Reference from the National Organization of Rare Disorders

Last Updated: February 25, 2014
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.

Hot Topics

WebMD Video: Now Playing

Click here to wach video: Dirty Truth About Hand Washing

Which sex is the worst about washing up? Why is it so important? We’ve got the dirty truth on how and when to wash your hands.

Click here to watch video: Dirty Truth About Hand Washing

Popular Slideshows & Tools on WebMD

feet
Solutions for 19 types.
MS Overview
Recognizing symptoms.
Woman running
Boost Your Metabolism.
build a better butt
How to build a better butt.
lone star tick
How to identify that bite.
young woman in sun
What to watch for.
brain scan with soda
Tips to kick the habit.
row of colored highlighter pens
Tips for living better.
stressed working woman
And how to fix them?
fat caliper
Check your BMI.
woman dreaming
What Do Your Dreams Say About You?
man with indigestion
How to keep yours at bay.

Pollen counts, treatment tips, and more.

It's nothing to sneeze at.

Loading ...

Sending your email...

This feature is temporarily unavailable. Please try again later.

Thanks!

Now check your email account on your mobile phone to download your new app.

Women's Health Newsletter

Find out what women really need.