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
61 Broadway, 6th Floor
New York, NY 10006
USA
Tel: (212)315-8700
Fax: (212)315-8870
Tel: (800)586-4872
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: (513)777-6889
Fax: (513)777-4109
Tel: (877)287-3526
Email: info@thelamfoundation.org
Internet: www.thelamfoundation.org

Second Wind Lung Transplant Association, Inc.
23609 Talbot
St Clair Shores, MI 48082
USA
Tel: (586)294-3162
Fax: (727)397-3609
Tel: (888)855-9463
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

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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

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.
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

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

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