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
- Cholangitis againby JeffDC1 on May 9, 2024
Good evening, all. Just got out of the hospital today after another round of cholangitis. On Sunday evening, I noticed my temp was elevated and hit 100.4. With each reading, I took my blood pressure. There was one that was 96/61, but I did not take any action on that. On Monday morning, as I was brushing my teeth, I felt an instant feeling of […]
- New Userby SillyGoose on May 2, 2024
Hello. This is my story, which is not as bad as many that I have read. I will try and stay on point. In 2014 I had an ultrasound and was told that my gall bladder needed to be removed via keyhole surgery. Within weeks it was removed via a cut about 3 inches long. My gall bladder contained over 100 stones and had yellow necrotic tissue. The […]
- Now diagnosed with high grade non-conventional dysplasiaby zmo on April 29, 2024
Will most likely need to get proctocolectomy since it is everywhere. We are getting a second opinion but it doesn’t look promising. If anyone has had this surgery in the Washington DC Metro area and were happy with their surgeon please let us know who you used. We are meeting with the Johns Hopkins surgeon on Wednesday. FYI, the first […]
- Not yet determined to be dysplasia – Next stepsby zmo on March 15, 2024
Continuing the discussion from Low grade dysplasia in recent colonoscopy: Hi Pam. Hope things have continued to go well for your son. My son just got results from his colonoscopy showing basal cell atypia but not yet determined to be dysplasia. It is in the descending colon and rectum. Because there is an ESD expert at his GI practice (Johns […]
- 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
