Important
It is possible that the main title of the report Primary Sclerosing Cholangitisis not the name you expected.
Synonyms
- Chronic Obliterative Cholangitis
- Fibrosing Cholangitis
- Stenosing Cholangitis
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: 2126681000
Fax: 2124838179
Tel: 8004654837
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 (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
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. Esther de Vries
Jeroen Bosch Hospital
Dept. Paediatrics
P.O. Box 90153
Hertogenbosch, 5200 ME's
Netherlands
Tel: +31 73-6992965
Fax: +31 73-6992948
Email: info@esid.org
Internet: http://www.esid.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: 4/25/2008
Copyright 1987, 1989, 1997, 2001National Organization for Rare Disorders, Inc.