National Organization for Rare Disorders, Inc.

It is possible that the main title of the report Lymphangioleiomyomatosis 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.


  • LAM
  • Lymphangioleimyomatosis
  • Lymphangioleiomatosis
  • Pulmonary Lymphangiomyomatosis
  • Sporadic Lymphangioleiomyomatosis

Disorder Subdivisions

  • None

General Discussion

Lymphangioleiomyomatosis (LAM) is a rare progressive multisystem disorder that predominantly affects women of childbearing age. It occurs in women who have tuberous sclerosis, and also in women who do not have a heritable genetic disorder. LAM is characterized by the spread and uncontrolled growth (proliferation) of specialized cells (smooth muscle-like LAM cells) in certain organs of the body, especially the lungs, kidney and lymphatics. Common symptoms associated with LAM include coughing and/or difficulty breathing (dyspnea), especially following periods of exercise or exertion. Affected individuals may also experience complications including collapse of a lung or fluid accumulation around the lungs (pleural effusion). The disorder is progressive and, in some cases, may result in chronic respiratory failure.


American Lung Association
1301 Pennsylvania Ave NW
Suite 800
Washington, DC 20004
Tel: (202)785-3355
Fax: (202)452-1805
Tel: (800)586-4872

NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223

The LAM Foundation
4015 Executive Park Drive, Suite 320
Cincinnati, OH 45241
Tel: (513)777-6889
Fax: (513)777-4109
Tel: (877)287-3526

Second Wind Lung Transplant Association, Inc.
P.O. Box 1657
Wimberley, TX 78676-1657
Tel: (512)847-9303
Tel: (888)855-9463

British Lung Foundation
73-75 Goswell Road
London, EC1V 7ER
United Kingdom
Tel: 02076885555
Tel: 03000030555

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

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766

LAM Health Project
1909 Capitol Avenue,
Suite 203
Sacramento, CA 95811
Tel: (617)460-7339
Fax: (617)864-0614

Lymphatic Malformation Institute
7475 Wisconsin Ave
Suite 600
Bethesda, MD 20814

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 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 or email

Last Updated:  5/5/2009
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