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.
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
- Norudca Phase 3 results available in Mayby Ted on April 12, 2025
This is promising news. I first heard about Norudca when I got diagnosed more than 10 years ago. Hopefully the long wait is over and this turns out to be a real cure or treatment. List of accepted late-breaker EASL abstracts: easlcongress.eu EASL-Congress-2025-_-LB-Abstracts.pdf 1026.73 KB Here […]
- Infectionby wqc on March 26, 2025
I’m looking for some help. I had a transplant (tx) June 2021 and for all intents and purposes the last three+ years have been a nothing burger. I’m healthy, gaining weight (which I lost a ton of before transplant) and feel good. Friday (3/14), we had a dinner party at my house and I felt just fine, in fact, better than fine.. it was a fun […]
- Intermitten headaches?by Mathew on March 23, 2025
Hi Just one question, i have daughter 16 years old who has occasional headache in forehead or more to the back. She is doing good with vanco but she tells me now and thena bout this headaches..so if anybody is expirience such thing please respond. Thank You 7 posts – 4 participants Read full topic
- Volunteer Opportunity: Marketing Manager (Email + Social Media)by Ben_Munoz on March 11, 2025
Do you have experience with marketing and a knack for crafting engaging content? Ben’s Friends is seeking volunteers for two distinct Marketing Manager roles—one focused on email marketing and the other on social media. Both roles play a vital part in helping us communicate with our members and supporters. Key Responsibilities Email […]
- Motivational sayingsby JeffDC1 on February 25, 2025
Hi. Just wanted to ask-what motivational sayings do you have that gets you through all the “stuff” we have to go through each day? I have two. One is an incident-specific saying, with limited applicability that later morphed into my second one that is much more useful. Any day you bust out of a hospital is a damn good day. We aren’t […]
