Lymphedema-Distichiasis Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Lymphedema-Distichiasis Syndrome 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

  • Lymphedema with Distichiasis

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 cleft palate, droopy eyelids (ptosis), abnormalities of the curved transparent outer layer of fibrous tissue covering the eyeball (cornea), cysts on the spinal cord, an abnormal sensitivity to light (photophobia), and cardiac (heart) defects. Lymphedema-distichiasis syndrome is caused by mutations of the FOXC2 gene and is inherited as an autosomal dominant trait.

Resources

National Lymphedema Network
Latham Square Building
1611 Telegraph Avenue
Suite 1111
Oakland, CA 94612-2138
Tel: (510)208-3200
Fax: (510)208-3110
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

National Lymphatic and Venous Diseases Foundation, Inc.
70 Heritage Ave
Unit 9
Portsmouth, NH 03801
USA
Tel: (603)334-8600
Fax: (603)334-6464
Tel: (800)301-2103

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

Lymphovenous Canada
8 Silver Ave
Toronto
Ontario, Intl M6R 1X8
Canada
Tel: 416-533-2428
Email: info@lymphovenous-canada.ca
Internet: http://www.lymphovenous-canada.ca

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

National Lipedema Association, Inc.
USA
Email: info@lipedema.org

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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

For a Complete Report

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

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