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 cells) in certain organs of the body, especially the lungs. 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
61 Broadway, 6th Floor
New York, NY 10006
USA
Tel: 2123158700
Fax: 2123158870
Tel: 8005864872
Internet: http://www.lungusa.org

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

LAM Foundation
4015 Executive Park Dr., Suite 320
Cincinnati, OH 45241
USA
Tel: 5137776889
Fax: 5137774109
Email: lsullivanstacey@thelamfoundation.org
Internet: www.thelamfoundation.org

Second Wind Lung Transplant Association, Inc.
23609 Talbot
St Clair Shores, MI 48082
USA
Tel: 5862943162
Fax: 7273973609
Tel: 8888559463
Email: beanpahoun@aol.com
Internet: http://www.2ndwind.org

British Lung Foundation
73-75 Goswell Road
London, Intl EC1V 7ER
United Kingdom
Tel: 08458 50 50 20
Email: info@britishlungfoundation.com
Internet: http://www.lunguk.org

LAM Treatment Alliance, Inc.
87 Garden Street
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, 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:  11/14/2008
Copyright  1987, 1989, 1995, 1996, 1998, 2005, 2008National Organization for Rare Disorders, Inc.