Primary Sclerosing Cholangitis (PSC) is a chronic bile duct disease that damages the bile ducts inside and outside the liver. Bile ducts carry bile from the liver to the intestines. 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 and cirrhosis of the liver and liver failure. Patients may eventually require a liver transplant.
PSC is a rare disease that predominantly affects 30-40 year-old men. However, PSC also occurs in children of any age, women, and the elderly. PSC affects about twice as many men as women. Many PSC patients are asymptomatic at the time of diagnosis. It is estimated that there are over 30,000 PSC patients in the United States. PSC is often found in people with inflammatory bowel disease (IBD), most often ulcerative colitis (UC) and sometimes Crohn’s disease. Over 75 percent of PSC patients have ulcerative colitis. PSC is also associated with other autoimmune diseases.
We’ve Come a Long Way
Momentum Toward Finding a Cure is Building
Please VIEW these videos and SHARE them to help bring awareness and understanding of this devastating disease. Whether you are a PSCer, friend, family member or health professional, you can help us spread the word!
See more educational material including downloadable brochures by using the main menu above. Hover over the “Patients & Caregivers” text then select items from the “Education” sub-block as shown in the image below.
Share Information with Your Network
There are many ways to increase awareness for PSC. Help others become #PSCaware by learning how you can spread the word.
|WAYS TO INCREASE PSC AWARENESS|
|JOIN OUR MAILING LIST||JOIN THE REGISTRY!
Learn more about the registry
|Change your social media profiles using Twibbon !
|Replace your social media profile/cover photos with the PSC Awareness Logo!
Profile: Facebook Twitter Cover: Facebook Twitter
|Participate in our Story Contest: Share your story on Facebook or with us via email!||Have a game party: Gather your friends and solve these PSC word jumbles and searches|
|Take brochures to your local GI or hepatology clinics and share on social media or email us to let us know you shared them!||Share our PSC Awareness Week page or select videos with friends and family!||Do a science project on PSC: Contact us us for helpful resouces (videos, images, research, etc.) See if your classmates can conquer the the word jumble afterwards. Send us a picture of your display or with classmates!|
|Tweet something about PSC to your network!||Share this picture with your network!||Wear your PSC flair everywhere to promote awareness!|
|Show off your scar(s) to a stranger or trusted colleague!||Write a poem or sing a song about PSC and share it on social media or send via email . See this example by Rex S.!||Share a picture to show that while you have PSC, PSC does not have you!|
|Say thank you to groups that are helping folks with PSC this week!||Complete this questionnaire: “30 Things About My PSC You May Not Know“. Share the results with your social media network. The list can be completed by patients, caregivers, friends or relatives! [PDF Version]|
|Click on each photo to read a story from a PSC patient or caregiver!|
|Amanda’s Story||David’s Story|
|Heather’s Story||Jennifer and Kyle’s Story||Laura’s Story|
|Sandi’s Story||Tawny’s Story|