Langerhans Cell Histiocytosis

Synonyms

• Histiocytosis-X
• Eosinophilic Granuloma
• Hand-Schuller Christian Syndrome
• Letterer-Siwe Disease

Disorder Subdivisions

• None

General Discussion

Langerhans cell histiocytosis (LCH) is a non-malignant proliferation of Langerhans cells (LC). Children and adults may have LCH in skin (macular, papular, ulcerative, or seborrheic rashes), bones (lytic lesions), lymph nodes, brain (pituitary, cerebrum and cerebellum) lung, liver, spleen, and bone marrow. Systemic symptoms may include fever, weight loss, draining ears, diabetes insipidus or other endocrinopathies.

Resources

Histiocytosis Association of America

332 North Broadway

Pitman, NJ 08071

Tel: (856)589-6606

Fax: (856)589-6614

Tel: (800)548-2758

Email: association@histio.org

Internet: http://www.histio.org



March of Dimes Birth Defects Foundation

1275 Mamaroneck Avenue

White Plains, NY 10605

Tel: (914)997-4488

Fax: (914)997-4763

Tel: (888)663-4637

Email: Askus@marchofdimes.com

Internet: http://www.marchofdimes.com



Diabetes Insipidus Foundation, Inc.

c/o Mike Gandrud

1232 24th Street

Ames, IA 50010

United States

Tel: (410)480-0880

Email: info@diabetesinsipidus.org

Internet: http://www.diabetesinsipidus.org



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/



Histiocytosis UK

25 Fox Close

Derby, Intl DE24 3JE

United Kingdom

Tel: 44 07527 166185

Fax: 44 1908 770373

Email: info@histiouk.net

Internet: http://www.histiocytosisuk.net/index.php



MUMS National Parent-to-Parent Network

150 Custer Court

Green Bay, WI 54301-1243

USA

Tel: (920)336-5333

Fax: (920)339-0995

Tel: (877)336-5333

Email: mums@netnet.net

Internet: http://www.netnet.net/mums/



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: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx

Internet: http://rarediseases.info.nih.gov/GARD



Histiocytosis Association of Canada

Box 29095

Okanagan Mission RPO

Kelowan, BC, V1W 4A7

Canada

Tel: 250-764-6104

Fax: 250-764-6104

Email: histio.canada@shaw.ca

Internet: http://www.histiocytosis.ca/



Histiocytosis Research Trust

PO Box 435

Leeds, LS17 1GE

UK

Tel: 07850 740241

Email: shelley.ross@hrtrust.org

Internet: http://www.hrtrust.org

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

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:  3/4/2009

Copyright  1987, 1989, 1992, 2002, 2003, 2004, 2007, 2009 National Organization for Rare Disorders, Inc.