Lymphedema-Distichiasis Syndrome

National Organization for Rare Disorders, Inc.

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Important
It is possible that the main title of the report Lymphedema-Distichiasis Syndrome is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Lymphedema-distichiasis syndrome is a rare genetic multisystem disorder characterized by swelling of the legs because of fluid accumulation and the development of extra eyelashes (distichiasis). Distichiasis may range from a few extra lashes to a full set of extra eyelashes. Swelling most often affects both legs (bilateral) and usually occurs around puberty. Additional anomalies sometimes associated with this disorder include early onset varicose veins, droopy eyelids (ptosis), cardiac (heart) defects, cleft palate, abnormal heart rhythm, and abnormal curvature of the spine (scoliosis). Lymphedema-distichiasis syndrome is caused by mutations of the FOXC2 gene and is inherited as an autosomal dominant trait.

Supporting Organizations

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
USA
Tel: 516-625-9675
Fax: 516-625-9410
Email: LERN@LymphaticNetwork.org
Website: http://www.lymphaticnetwork.org

Lymphovenous Canada

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

March of Dimes

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Email: AskUs@marchofdimes.org or preguntas@nacersano.org
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: nhlbiinfo@rover.nhlbi.nih.gov
Website: http://www.nhlbi.nih.gov/

National Lymphedema Network, Inc.

225 Bush Street
Suite 357
San Francisco, CA 94104
Tel: (415)908-3681
Fax: (415)908-3813
Tel: (800)541-3259
Email: nln@lymphnet.org
Website: http://www.lymphnet.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:  4/27/2015
Copyright  2015 National Organization for Rare Disorders, Inc.

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Lymphedema-Distichiasis Syndrome