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    Lymphangioleiomyomatosis

    Lymphangioleiomyomatosis

    National Organization for Rare Disorders, Inc.

    Important
    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.

    Synonyms

    • 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.

    Resources

    American Lung Association
    1301 Pennsylvania Ave NW
    Suite 800
    Washington, DC 20004
    USA
    Tel: (202)785-3355
    Fax: (202)452-1805
    Tel: (800)586-4872
    Email: info@lungusa.org
    Internet: http://www.lungusa.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
    Internet: http://www.nhlbi.nih.gov/

    The LAM Foundation
    4015 Executive Park Drive, Suite 320
    Cincinnati, OH 45241
    USA
    Tel: (513)777-6889
    Fax: (513)777-4109
    Tel: (877)287-3526
    Email: info@thelamfoundation.org
    Internet: http://www.thelamfoundation.org/

    Second Wind Lung Transplant Association, Inc.
    P.O. Box 1657
    Wimberley, TX 78676-1657
    USA
    Tel: (512)847-9303
    Tel: (888)855-9463
    Email: barlows9303@gmail.com
    Internet: http://www.2ndwind.org

    British Lung Foundation
    73-75 Goswell Road
    London, EC1V 7ER
    United Kingdom
    Tel: 02076885555
    Tel: 03000030555
    Email: info@britishlungfoundation.com
    Internet: http://www.lunguk.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
    Internet: http://rarediseases.info.nih.gov/GARD/

    Madisons Foundation
    PO Box 241956
    Los Angeles, CA 90024
    Tel: (310)264-0826
    Fax: (310)264-4766
    Email: getinfo@madisonsfoundation.org
    Internet: http://www.madisonsfoundation.org

    LAM Treatment Alliance, Inc.
    50 Church Street
    5th Floor
    Cambridge, MA 02138
    Tel: (617)460-7339
    Fax: (617)864-0614
    Email: info@lamtreatmentalliance.org
    Internet: http://www.LAMTreatmentAlliance.org

    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:  5/5/2009
    Copyright  1987, 1989, 1995, 1996, 1998, 2005, 2009 National Organization for Rare Disorders, Inc.

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