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.
- Vanco for people older than 40yrby Ted on November 7, 2023
It is well-established that Oral Vancomycin for PSC works extremely well for children. It also seems clear that it works well for many young adults (patients in their twenties or early thirties). But what about patients in their forties and older? How many people here have had success when starting Vancomycin after age 40? In this forum, I […]
- Portal hypertension & Portopulmonary hypertensionby Ivy on November 5, 2023
Hi all. It’s been a while since I’ve been on here and hope everyone is doing well. Just wondering if anyone has experienced any impact on their heart as a result of portal hypertension? Having had a full body CT for another reason it showed the right side of my heart is enlarged. ECGs and ultrasounds have always been normal, although my right […]
- Revisitingby cathroy on November 1, 2023
Hi, I haven’t posted in awhile, I was diagnosed with psc about 30 years ago. I have been doing well for the most part and was put on the transplant list. My Meld score is at 26 which is the highest it has ever been. Well I have 2 questions, 1 is about pets, post transplant does anybody know how long I should not be around them. And also […]
- Transplant coming upby sgrabiner on October 26, 2023
Hi all, Things have progressed very rapidly for me recently. I’m scheduled to have a transplant 11/7. I have a donor lined up. The speed of preparation has caught me somewhat off guard. I’d be extremely grateful for any thoughts, tips, advice. Thank you in advance, Steve 10 posts – 6 participants Read full topic
- Ben’s Friends Fundraisingby ModSupport on October 21, 2023
Could you help with our fundraising activities this year? As you may know, access to our patient communities is free of charge – there is the opportunity for community members, be they patients, relatives or friends to subscribe to Patreon or to donate through our webpage but there’s no obligation to pay. However, Ben’s Friends communities […]