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
61 Broadway, 6th Floor
New York, NY 10006
NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
4015 Executive Park Dr., Suite 320
Cincinnati, OH 45241
Second Wind Lung Transplant Association, Inc.
St Clair Shores, MI 48082
British Lung Foundation
73-75 Goswell Road
London, Intl EC1V 7ER
Tel: 08458 50 50 20
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
PO Box 241956
Los Angeles, CA 90024
LAM Treatment Alliance, Inc.
87 Garden Street
Cambridge, MA 02138
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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