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.
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 USA Tel: (202)785-3355 Fax: (202)452-1805 Tel: (800)586-4872 Email: firstname.lastname@example.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: email@example.com 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: firstname.lastname@example.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: email@example.com Internet: http://www.2ndwind.org
British Lung Foundation 73-75 Goswell Road London, EC1V 7ER United Kingdom Tel: 02076885555 Tel: 03000030555 Email: firstname.lastname@example.org 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: email@example.com 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: firstname.lastname@example.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 email@example.com
Last Updated: 5/5/2009 Copyright 1987, 1989, 1995, 1996, 1998, 2005, 2009 National Organization for Rare Disorders, Inc.
How this information was developed to help you make better health decisions.
Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.