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
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby Ben on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that no one faces a rare disease alone. Thanks to donors like you, we have recently: Redesigned our […]
- Happy Thanksgiving 2024by fcmmark on November 29, 2024
On this Thanksgiving Day, I want to wish everyone here in the PSC Community a blessed Thanksgiving. Amidst the rare disease we have shared, we still have so much to be thankful for. I am very grateful for what Ben’s Friend’s has contributed to my own life while fighting PSC years ago now. We need these patient communities to continue for those […]
- Alcohol in moderationby Phyllis on November 4, 2024
I’ve been recently diagnosed with PSC. I’ve had an ultrasound, CT scan, MRI/MRCP and ERCP to confirm diagnosis. I have no symptoms. I’ll be having MRIs and blood work down the road to assess the progress of the disease. Do I need to give up drinking alcohol entirely? I’m a moderate drinker. At the most I’ll have one or two drinks […]
- A good messageby JeffDC1 on October 31, 2024
I just came across an excellent quote: “On days you only have 40% to give and you gave 40%, you gave 100%”. The lesson I get out of this quote is to not be too hard on yourself. 1 post – 1 participant Read full topic
- My Story –by Phyllis on October 30, 2024
I’m a 77-year-old woman, an unlikely demographic for a PSC diagnosis. I understand this disease, which occurs in 1 in 10,000 people, primarily strikes middle-aged men, IBD being a risk factor. I am not the right sex, age, nor do I have IBD, After repeated blood work in 2023 indicating elevated liver enzymes, I had an abdominal ultrasound in […]
