Finding support for Primary sclerosing cholangitis? Connect with people like you.

A welcome banner for Living With Primary Sclerosing Cholangitis (PSC) community featuring a group of hands symbolizing unity

Living with Primary sclerosing cholangitis is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Primary sclerosing cholangitis (PSC) is characterized by inflammation in the bile ducts (cholangitis) that leads to scarring (sclerosis), narrowing of the ducts, and a buildup of bile in the liver. Early signs and symptoms include extreme tiredness, abdominal pain, and itchiness. Other complications may include weight loss, vitamin deficiency, and osteoporosis. Many people with PSC develop other autoimmune conditions such as inflammatory bowel disease, type 1 diabetes, celiac disease, or thyroid disease. PSC is also a risk factor for cancer of the bile ducts (cholangiocarcinoma).

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.

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Why create an account?

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.

Latest Discussions

  • My story…
    by Lasardo on January 28, 2025

    I’m new here and new to PSC if that what I have. My journey began with the birth of my daughter with a 4th degree tear and a diagnosis of Crohn’s dx. I had several repairs for fistulas and another major surgery which removed my appendix, gallbladder and uterus… colostomy bag. I continued to have major complications from my Crohn’s dx and […]

  • Ferritin 461
    by Lasardo on January 28, 2025

    I am recently diagnosed with PSC. For now, we are simply monitoring with 3 posts – 3 participants Read full topic

  • For those of you who have Chrons
    by JeffDC1 on January 27, 2025

    Hi, while not PSC-related, quite a few of you have Chrons in addition to PSC. I saw this release this afternoon: NEWS PROVIDED BY Eli Lilly and Company Jan 15, 2025, 16:06 ET SHARE THIS ARTICLE In the pivotal Phase 3 VIVID-1 trial, patients treated with Omvoh experienced significant improvement in clinical remission and endoscopic response at […]

  • FMT treatment for PSC
    by michael on January 23, 2025

    I’m currently participating in a fecal matter transplant (FMT) trial in which I’ve experienced increased inflammation presenting itself as intense headaches and gum pain. Has anyone else had any experience with FMT? 1 post – 1 participant Read full topic

  • Ammonia levels in blood
    by GlasshalfFULL on January 20, 2025

    Hello all just wanted to see if anyone had any experience with high ammonia levels in their blood. Mine is at around 215 and my wife was concerned because I was starting to show some cognitive hiccups throughout random times over the last eight months so I went to get the ammonia blood test done and it was very high. I was just prescribed a […]