Welcome to Living with Primary sclerosing cholangitis (PSC) Community!
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.
- Heads up! Happening soon …by Rose_BensFriends on May 21, 2023
One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of https://forum.livingwithpsc.org/ and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to […]
- Advice on coping with portal hypertension?by MBLand on May 20, 2023
Hi all, I just had an ERCP to relieve a flare (I had been getting ERCPs regularly for stent exchanges, but last time we left the stent out to see what would happen)… I had mentioned to the docs about having some melana, so they did an EGD first and found grade 2/3 esophogeal varices and mild portal hypertensive gastropathy. There didn’t seen […]
- 7 Things to Look for When Choosing a Doctorby BF_Writer on May 4, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our […]
- Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MDby BF_Writer on April 25, 2023
Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a space to find answers as well as comfort from people who truly care. The Ben’s Friends team, on the […]
- Test results chart interpretationby JeffDC1 on April 25, 2023
I try to post this every so often. The original link I posted is now broken, so here is the interpretations from another source. It helps put into english the terms on our test results. https://pscpartners.org/file_download/inline/cad26422-1d7d-4c29-9791-0979868a9761 4 posts – 4 participants Read full topic