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About PSC

If you or a loved one is newly diagnosed with primary sclerosing cholangitis (PSC), you’re not alone, and you’ve come to the right place.

At PSC Partners, we’re together in the fight, whatever it takes.

Primary Sclerosing Cholangitis (PSC) is a rare liver disease that damages the bile ducts inside and outside the liver.

Click here for a list of PSC-related medical terms.

PSC: THE FACTS

  • Your Liver and Why It's Important: The liver is the largest internal organ in the body and has more than 500 vital functions to help keep your body healthy, including:

    ·        Making bile to help break down fats in the small intestine for digesting food, and for removing waste products or toxic substances

    ·        Producing proteins for blood plasma

    ·        Removing bilirubin and cholesterol, and metabolizing drugs

    ·        Storing carbohydrates, vitamins, and minerals

  • Progression: With PSC, bile ducts become inflamed, which causes scarring and narrowing of the affected ducts. Eventually, blockages may occur. As the scarring blocks more and more ducts, bile becomes trapped in the liver. This damages the liver and can result in fibrosis (thickening and scarring of tissue) and cirrhosis (severe scarring) of the liver, and liver failure. Some patients may eventually require a liver transplant.
  • Age/Gender: PSC does not discriminate based on age or gender, but affects about twice as many males as females. Many PSC patients are asymptomatic at the time of diagnosis.
  • Occurrence: It is estimated that there are more than 30,000 PSC patients in the United States.
  • IBD: PSC often is found in people with inflammatory bowel disease (IBD), most often ulcerative colitis (UC) and sometimes Crohn’s disease. More than 75 percent of PSC patients have ulcerative colitis. PSC also is associated with other autoimmune diseases.
  • Getting Diagnosis: PSC is a rare disease. It can take time to receive a PSC diagnosis, but, thanks to an increase in knowledge about this rare disease, that is changing. As you likely know, in the beginning, PSC symptoms can be minor or completely absent. Oftentimes, a blood test indicating a liver enzyme issue is the first sign that something is wrong. Now that you have been diagnosed with this disease, you want information and answers. We understand, and that’s a great place to start.
  • Quality of Life: Thousands of people with PSC live active and full lives. There are proactive steps you can take to prepare for your future. Join a support group, attend the PSC Partners annual conference, join the PSC Partners social media groups, and more.
  • PSC Code: Diseases have codes to identify them. PSC recently acquired its own, unique ICD-10-CM code. Please remind your medical providers to use the code K83.01 to accurately classsify your PSC diagnosis. This identification will help researchers, clinicians, and others working to find a cure for PSC. Click here for a link to a printable postcard to give your doctor.
  • Join Registry: Join the PSC Partners Patient Registry. The registry stores information about those affected by PSC. This information helps researchers and clinicians unlock the mystery of PSC as they search for treatments and a cure. The link to join the registry is at the bottom of this page. 

Follow the links on the left of this page to learn more about primary sclerosing cholangitis (PSC).

Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.