Living with Primary sclerosing cholangitis is an online patient support community powered by BensFriends.org, a trusted network of safe, supportive spaces for people living with rare diseases. Whether you’re a patient, caregiver, or loved one, you’re not alone. Connect with others who understand what you’re going through.
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What is PSC?
Primary Sclerosing Cholangitis (PSC) is a rare, chronic liver disease that affects the bile ducts, causing inflammation and scarring that can lead to serious liver damage over time. People with PSC may experience fatigue, itching, abdominal pain, or no symptoms at all in early stages. It often occurs alongside inflammatory bowel disease, especially ulcerative colitis. While there is currently no cure, early diagnosis, careful monitoring, and community support can help manage symptoms and improve quality of life. Learn more about helpful information about PSC.
National Institutes of Health (NIH) has additional information about Primary sclerosing cholangitis (PSC) here.
LivingWithPSC.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Why Join Our Community?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Popular Forum Categories
| Getting Started and Introductions | Tell us about yourself, we want to hear your story |
| Life with Primary Sclerosing Cholangitis | Share day-to-day experiences, challenges, and lifestyle tips. |
| Symptoms and Treatment | Ask questions and learn from others’ diagnostic journeys. |
| Support and Caregivers | Share support, experiences, and caregiver insights related to PSC. |
Latest Discussions and Resources
- What is PSC?by ModSupport on June 3, 2025
Primary Sclerosing Cholangitis (PSC) is a rare and chronic disease that is characterized by inflammation and scarring within the bile ducts, causing them to narrow and, eventually, become completely obstructed. This, in turn, restricts the normal flow of bile, ultimately resulting in liver damage. There is no known cure or specific treatment for […]
- PSC Family Toolkitby ModSupport on May 23, 2025
A helpful guide for patients, families, and caregivers living with Primary Sclerosing Cholangitis (PSC). 1. PSC Glossary: Terms You’ll Hear ERCP / MRCP Imaging tests used to view the bile ducts. ERCP is invasive; MRCP is MRI-based and non-invasive. Fibrosis / Cirrhosis Fibrosis is liver scarring. Cirrhosis is advanced scarring that affects […]
- PSC – Vanco dosage questionby Mirei81101 on May 22, 2025
My 16 year old daughter has had PSC since age 4. She has been well conrolled on 250 mg 2x a day of Vancomycin for all this time. Recently her doctor did a colonoscopy and it shows microscopic colitis. She now wants to get rid of Vancomycin and switch her to Entyvio. I’m asking if we can please increase her dose and she’s not wanting to do […]
- New Theme for PSC Community Siteby fcmmark on May 21, 2025
Dear Members, We have been working on developing a new theme for our PSC site. We are hoping to consolidate some categories, etc., and to give a little facelift to our site. We would appreciate your feedback once we post the changes. This is a work in progress, which we have been developing for some time. I trust it will be a refreshing […]
- Slow bleed?by MBLand on May 18, 2025
Background: UC with ileal ulcers, PSC with stent, banded esophageal varices, portal hypertensive gastritis (mild?), iron deficiency anemia, MELD 9 (three weeks ago), slight fever, normal BP and pulse Been having two weeks of bad cramping central/right abdominal pain. Food seems to make it worse. Had a urgently low hemoglobin (5.2) this week, got […]
