Klippel-Trenaunay Syndrome

Important
It is possible that the main title of the report Klippel-Trenaunay 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

Angio-Osteohypertrophy Syndrome
Congenital Dysplastic Angiectasia
Elephantiasis Congenita Angiomatosa
Hemangiectatic Hypertrophy
Klippel-Trenaunay-Weber Syndrome
KTW Syndrome
Osteohypertrophic Nevus Flammeus
KTS

Disorder Subdivisions

Parkes-Weber Syndrome

General Discussion

Klippel-Trenaunay Syndrome, a rare disorder that is present at birth (congenital), is characterized by abnormal benign growths on the skin (cutaneous) consisting of masses of blood vessels (hemangiomas), excessive growth (hypertrophy) of the soft tissue and bone of a leg and/or arm (limb), and varicose veins. (In individuals with the disorder, such hypertrophy typically affects one side of the body [hemihypertrophy].) In many cases, hemangiomas may consist of distinctive purplish-reddish birthmarks ("port wine stain" or nevus flammeus) on certain areas of the skin. The symptoms and findings associated with the disorder may vary in range and severity from case to case.
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Resources

Nevus Network
The Congenital Nevus Support Group
P.O. Box 305
West Salem, OH 44287
USA
Tel: 4198534525
Fax: 4053773403
Email: info@nevusnetwork.org
Internet: http://www.nevusnetwork.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Sturge-Weber Foundation
PO Box 418
Mt. Freedom, NJ 07970
Tel: (973)895-4445
Fax: (973)895-4846
Tel: (800)627-5482
Email: swf@sturge-weber.com
Internet: http://www.sturge-weber.com

Klippel-Trenaunay Support Group
5404 Dundee Road
Edina, MN 55436
Tel: (952)925-2596
Fax: (952)925-2596
Email: j.vessey@att.net
Internet: http://www.k-t.org

National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Email: braininfo@ninds.nih.gov
Internet: http://www.ninds.nih.gov/

Lymphovenous Canada
8 Silver Ave
Toronto
Ontario, Intl M6R 1X8
Canada
Tel: 416-533-2428
Fax: 416-539-8348
Email: info@lymphovenous-canada.ca
Internet: http://www.lymphovenous-canada.ca

National Organization of Vascular Anomalies
PO Box 8711-104 Six Forks Road
PMB 126
Raleigh, NC 27615
Tel: (919)844-0370
Email: admin@mail.novanews.org
Internet: http://www.novanews.org

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

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: 1/12/2002
Copyright 1987, 1990, 1998, 2000, 2002 National Organization for Rare Disorders, Inc.

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