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
- CM-101 Phase 2 trial (positive results)by Ted on July 25, 2024
RTTNews Chemomab Reports Positive Results For Phase 2 Trial Of CM-101 Chemomab Therapeutics Ltd. (CMMB) Thursday announced positive results from the Phase 2 SPRING trial of monoclonal antibody, CM-101, in patients with primary sclerosing cholangitis. Chemomab Therapeutics Ltd. (CMMB) Thursday announced […]
- 9th Transplant Anniversaryby fcmmark on July 23, 2024
Hi all. Today marks the 9th anniversary of my liver transplant on July 23, 2015. I will never forget that day. I am so very thankful to the donors family for giving me the gift of life. I am thankful for the opportunity to meet them and we have stayed in contact over the years. It’s a gift that you will never forget. I want to encourage all […]
- We Need Your Financial Supportby fcmmark on July 10, 2024
Dear PSC Community, From the beginning of Ben’s Friends Rare Disease Communities, we have desired to provide these sites free of charge to our patients and their families. However, it costs us several thousand dollars a month to keep our 40+ rare communities up and running. Would you consider a tax-deductible contribution to Ben’s Friends? […]
- Anyone Have Two Transplants?by Freddy on July 3, 2024
Got first transplant in 2017 and testing a year ago PSC has recurred and got put on cadaver list today. Anyone else have two transplants? How it went? Etc? Prayers much appreciated. Freddy 5 posts – 4 participants Read full topic
- Low hemocrit and hemoglobinby JeffDC1 on June 29, 2024
Has anyone had really low levels of hemocrit and hemoglobin? If so, what was the cause/outcome? With blood work done for a 7 year checkup and by my GI a week later, my levels both time were: Hemocrit: 24.4 and 23.1. Normal range is 38-49 Hemoglobin: 8.5 and 7.7. Normal range is 14 to 18 So I am being referred to a doctor to have an iron […]
