Health Information

 

 

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

1301 Pennsylvania Ave NW

Suite 800

Washington, DC 20004

USA

Tel: (202)785-3355

Fax: (202)452-1805

Tel: (800)586-4872

Email: info@lungusa.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: nhlbiinfo@rover.nhlbi.nih.gov

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: info@thelamfoundation.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: barlows9303@gmail.com

Internet: http://www.2ndwind.org



British Lung Foundation

73-75 Goswell Road

London, EC1V 7ER

United Kingdom

Tel: 02076885555

Tel: 03000030555

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

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: getinfo@madisonsfoundation.org

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: 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 (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 orphan@rarediseases.org

Last Updated:  5/5/2009

Copyright  1987, 1989, 1995, 1996, 1998, 2005, 2009 National Organization for Rare Disorders, Inc.

This information does not replace the advice of a doctor. Healthwise, Incorporated disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. 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.