Primary Sclerosing Cholangitis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Primary Sclerosing Cholangitis 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

  • Chronic Obliterative Cholangitis
  • Fibrosing Cholangitis
  • Stenosing Cholangitis

Disorder Subdivisions

  • None

General Discussion

Primary sclerosing cholangitis is a rare progressive disorder characterized by inflammation, thickening, and abnormal formation of fibrous tissue (fibrosis) within the passages that carry bile from the liver (bile ducts). This often results in the obstruction or interruption of bile flow from the liver (cholestasis). Symptoms associated with primary sclerosing cholangitis include fatigue and itching (pruritis), followed by yellowing of the skin, mucous membranes, and whites of the eyes (jaundice). In addition, affected individuals may have dark urine, light-colored stools, abdominal pain, and/or nausea. In some cases, the liver may also become abnormally enlarged (hepatomegaly). According to the medical literature, approximately 50 to 75 percent of individuals with primary sclerosing cholangitis may also have ulcerative colitis. The exact cause of primary sclerosing cholangitis is not known.

Resources

American Liver Foundation
75 Maiden Lane
Suite 603
New York, NY 10038
USA
Tel: (212)668-1000
Fax: (212)483-8179
Tel: (800)465-4837
Email: info@liverfoundation.org
Internet: http://www.liverfoundation.org

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

Canadian Liver Foundation
2235 Sheppard Avenue
Suite 1500
Toronto, Ontario, Intl M2J 5B5
Canada
Tel: (416) 491-3353
Fax: (416) 491-4952
Tel: (800) 563-5483
Email: clf@liver.ca
Internet: http://www.liver.ca

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

Autoimmune Information Network, Inc
PO Box 4121
Brick, NJ 08723
Tel: (732)664-9259
Email: autoimmunehelp@aol.com
Internet: http://www.aininc.org

PSC Partners Seeking a Cure
5237 South Kenton Way
Englewood, CO 80111
Tel: (303)771-5227
Fax: (303)221-0757
Email: pscpartners@yahoo.com
Internet: http://www.pscpartners.org

European Society for Immunodeficiencies (ESID)
c/o Dr. Bodo Grimbacher (ESID Board Member)
Division of Rheumatology and Clinical Immunology
Department of Medicine, University Hospital Freiburg
Hugstetter Strasse 55
Freiburg, D-79106
Germany
Tel: +31 73-6992965
Fax: +31 73-6992948
Email: info@esid.org
Internet: http://www.esid.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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