Primary Sclerosing Cholangitis (PSC) - Online Support Group

Primary sclerosing cholangitis is a liver disease in which the bile ducts (small tubes through which bile flows from the liver to the gall bladder and intestines) progressively decrease in size due to inflammation and scarring. As a result, bile that is normally carried out of the liver accumulates within the liver, which then damages liver cells. How common is primary sclerosing cholangitis? Although primary sclerosing cholangitis has been considered a rare disease, recent studies suggest that it is more common than originally thought. The disease may occur alone, but frequently exists in association with inflammatory diseases of the colon, such as chronic ulcerative colitis. Primary sclerosing cholangitis affects both sexes, but is more common in men.

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.

Bring all your health information together in one place that’s portable and secure. Share some of it or all of it with those involved in your care – especially if you or a loved one are living with a complex health condition or away from home. It’s your health, always on hand. Backpack Health, in partnership with Ben’s Friends, has established a PsA community where you can centralize all of your health records in one private place that you control. The portable and user-friendly Backpack Health app gives you complete control, privacy and sole ownership of your health data. And it’s free.

Tell us about yourself. We want to hear your story.

Open discussion about PSC

What symptoms are you having and how do you cope?

This is the place to talk about all things transplant-related. Personal stories and experiences, pre-op preparations, post-op recovery, and emotions surrounding transplants. If you have had a successful transplant, we hope you will help encourage those who are preparing for transplant. No donor solicitations, please.

Articles may not be peer reviewed or authoritative. Please do not use them as a basis for self-treating

Give us an update. How are you doing?

Having a rough time? We're here to listen.

Because this is an international community made up of people with different faiths and beliefs, we ask that religious advice and prayers be offered here. Start your own topic (+ New Topic) and feel free to ask others to join you, using the “invite” feature at the bottom of the page

News from Bens Friends -

Participating in clinical studies is critical to understanding PSC and to developing effective treatments. The opportunities for PSC patients to participate in studies has increased significantly in the last decade and hopefully will continue to increase as we make progress towards improving the lives of PSC patients This is the place to support and share with others in your trial your experience. Announcements of Clinical Trials and enrollment Information MUST be approved by Ben’s Friends Medical Officers and be listed in the NIH at https://www.clinicaltrials.gov/

Want to recommend a doctor, therapist, or clinic? Positive review only, please.

Member Photos and videos

Welcome to Complementary Therapies! This is the place to discuss the array of complementary healing modalities that many of us rely on to help us live healthier lives. Whether you're looking to do more to promote your own health while undergoing medical treatment, or are waiting to get medical treatment and are looking to do what you can to feel better in the meantime, this is the place to post your questions and information. We will discuss everything from acupuncture and chiropractic to nourishing our bodies, minds, and spirits. This is the place to discuss healing modalities that can complement medical treatment.

Events of Interest to PSC Patients. Just contact a mod to have your event listed. (all postings must be approved)

Resource copy of Blogs from old site

Discussion about this site, its organization, how it works, and how we can improve it.

FAQ about the PSC Community

Bens Friends Apps for mobile Devices