Diseases & Conditions


A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Primary Sclerosing Cholangitis


Synonyms of Primary Sclerosing Cholangitis
  • Chronic Obliterative Cholangitis
  • Fibrosing Cholangitis
  • Stenosing Cholangitis

Disorder Subdivisions



    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.

    Organizations related to Primary Sclerosing Cholangitis
    • American Liver Foundation
      75 Maiden Lane
      New York NY 10038
      Phone #: 212-668-1000
      800 #: 800-465-4837
      e-mail: info@liverfoundation.org
      Home page: http://www.liverfoundation.org
    • Autoimmune Information Network, Inc
      PO Box 4121
      Brick NJ 08723
      Phone #: 732-664-9259
      800 #: N/A
      e-mail: autoimmunehelp@aol.com
      Home page: http://www.aininc.org
    • Canadian Liver Foundation
      2235 Sheppard Avenue
      Toronto, Ontario Intl M2J 5B5
      Phone #: (41-6) -491-3353
      800 #: (80-0) -563-5483
      e-mail: clf@liver.ca
      Home page: http://www.liver.ca
    • European Society for Immunodeficiencies (ESID)
      c/o Dr. Esther de Vries
      Hertogenbosch None 5200 ME's
      Phone #: +31- 73--6992965
      800 #: N/A
      e-mail: info@esid.org
      Home page: http://www.esid.org
    • MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
      150 Custer Court
      Green Bay WI 54301-1243
      Phone #: 920-336-5333
      800 #: 877-336-5333
      e-mail: mums@netnet.net
      Home page: http://www.netnet.net/mums/
    • NIH/National Digestive Diseases Information Clearinghouse
      2 Information Way
      Bethesda MD 20892-3570
      Phone #: 301-654-3810
      800 #: 800-891-5389
      e-mail: nddic@info.niddk.nih.gov
      Home page: http://www.niddk.nih.gov
    • PSC Partners Seeking a Cure
      5237 South Kenton Way
      Englewood CO 80111
      Phone #: 303-771-5227
      800 #: N/A
      e-mail: pscpartners@yahoo.com
      Home page: http://www.pscpartners.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