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Primary Sclerosing Cholangitis

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

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
800: (800)465-4837
info@liverfoundation.org
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
800: (800)891-5389
nddic@info.niddk.nih.gov
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
800: (800) 563-5483
clf@liver.ca
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: (920)336-5333
Fax: (920)339-0995
800: (877)336-5333
mums@netnet.net
http://www.netnet.net/mums/

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

PSC Partners Seeking a Cure
5237 South Kenton Way
Englewood
CO
80111
Tel: (303)771-5227
Fax: (303)221-0757
pscpartners@yahoo.com
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
info@esid.org
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, 2001 National Organization for Rare Disorders, Inc.

WebMD Medical Reference from the National Organization of Rare Disorders

Last Updated: April 25, 2008
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.
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