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.
- A Liver Transplant Love Storyby fcmmark on February 14, 2024
Happy Valentines Day all. I wanted to share this tremendous video of a dear lady with PSC who needed a liver transplant. This was put out by pscpartners.org. Hope you enjoy. Our Liver Love Story: Jessica and Ian Travis Mark @trust_level_0 4 posts – 4 participants Read full topic
- Your Stories – How Has “Living With PSC” Benefited You?by fcmmark on January 4, 2024
@trust_level_0 @ModSupport Dear PSC Community, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we […]
- Merry Christmasby fcmmark on December 25, 2023
@trust_level_0 Dear PSC Community, We here at Ben’s Friends Rare Disease Communities wish you and your family a very Merry Christmas and a Happy New Year. It’s been a privilege to get to know many of you over this past year. As the fight with PSC goes on in our lives, may we look with hope for a brighter future as the new year unfolds. We […]
- Helpful Information about Primary Sclerosing Cholangitisby BF_Writer on December 10, 2023
Sascha Gallardo – November 7, 2023 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 […]
- 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 […]