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.
- Pulmonary Lymphangiomyomatosis
- Sporadic Lymphangioleiomyomatosis
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
- Email: firstname.lastname@example.org
- Website: http://www.lungusa.org
British Lung Foundation
- 73-75 Goswell Road
- London, EC1V 7ER
- United Kingdom
- Tel: 2076885555
- Tel: 3000030555
- Email: email@example.com
- Website: 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
- Website: http://rarediseases.info.nih.gov/GARD/
LAM Health Project
- 1909 Capitol Avenue,
- Suite 203
- Sacramento, CA 95811
- Tel: (617)460-7339
- Fax: (617)864-0614
- Email: info@LAMHealthProject.org
- Website: www.LAMHealthProject.org
Lymphatic Malformation Institute
- 7475 Wisconsin Ave
- Suite 600
- Bethesda, MD 20814
- Email: firstname.lastname@example.org
- Website: http://www.lmiresearch.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
- Website: http://www.nhlbi.nih.gov/
Second Wind Lung Transplant Association, Inc.
- P.O. Box 1657
- Wimberley, TX 78676-1657
- Tel: (512)847-9303
- Tel: (888)855-9463
- Email: firstname.lastname@example.org
- Website: http://www.2ndwind.org
The LAM Foundation
- 4015 Executive Park Drive, Suite 320
- Cincinnati, OH 45241
- Tel: (513)777-6889
- Fax: (513)777-4109
- Tel: (877)287-3526
- Email: email@example.com
- Website: http://www.thelamfoundation.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 firstname.lastname@example.org
Last Updated: 12/28/1969
Copyright 2009 National Organization for Rare Disorders, Inc.
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