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 and PSC Partners Canada, 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. It is not currently known what causes PSC, but it is thought to be a combination of genetics and environment. It is considered an autoimmune liver disease.
BASIC FACTS ABOUT PSC
- The Liver is the second largest organ (behind the skin) in the body and has many important functions (around 500) 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, cholesterol, and drugs
- Storing carbohydrates, vitamins, and minerals
- Progression: With PSC, bile ducts are inflamed, and the inflammation leads to 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 3,000 PSC patients in Canada.
- 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.
- 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.
Additional Resources to Learn about PSC
- PSC Partners website for extensive and reliable information about PSC including links to videos and presentations from over 10 years of patient conferences
- Fall 2019 presentation video “Update for Patients” by Toronto Centre for Liver Disease clinician Dr. Gideon Hirschfield
- Living with PSC Brochure in English or French
- Paediatric PSC Brochure English or French
- PSC Partners Patient Registry Brochure in English or French
- check back for more resources