Support
Primary Sclerosing Cholangitis (PSC) is a rare and often misunderstood disease—not everyone gets it. We live it, we navigate its challenges, and we find strength in one another. Through the ups and downs, we share a bond that connects us in a way only those who truly understand PSC can feel.
Support For You
& Your Family
PSC Partners Seeking a Cure provides support for PSC patients, families, and caregivers in many ways, including:
Other Online Support Groups
Before making any medical decisions, always check with your doctor.
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Atlanta Area
Contact: Fred Sabernick
Australia
PSC Support Australia (Closed Facebook Group)
Israel
Israel PSC Support (Facebook) Contact: Ellen and Chaim Boermeester or Sindee Weinbaum
New Zealand
New Zealand PSC Kiwi Support (Closed Facebook Group)
Norway
Norway PSC Support (Facebook)
San Francisco
California Pacific Medical Center (CPMC) Autoimmune Liver Disease Program sponsors free monthly support meetings. There is a dial-in option for those who wish to attend remotely.
Those living with PSC, PBC, and Autoimmune Hepatitis (AIH), family members, loved ones, and caregivers are invited to participate in this group to learn and share experiences with others. The purpose is to provide informational, emotional, and other forms of support in an open, accepting environment. Educational sessions will be provided based on topics of interest from the group.
To register, email cpmcAILD@sutterhealth.org.
United Kingdom
Established in 1995 in the United Kingdom, PSC Support is a patient organization dedicated to helping people affected by PSC. Its mission is to improve the lives of people with PSC and to work towards a future without PSC. PSC Support can be contacted at info@pscsupport.org.uk.
“PSC Support values our international links with PSC Partners Seeking a Cure, and we recognise that sharing information and collaborating together will strengthen our already strong patient voice. PSC knows no boundaries. Whenever we can work together to enhance the impact of our work rather than duplicate efforts, we will.”
Martine Walmsley, Chair of Trustees
Start a Local Support Group
Living with PSC is a difficult experience for everyone affected by this disease. Personal connections between and among PSCers and caregivers are valuable sources of support, and local support groups are one of the best ways to make these connections. If there isn’t a support group in your area, we encourage you to start one! The support group can take whatever form you wish, from a casual get-together every few months to regular, structured meetings. The key is to make the support group your own by personalizing the gathering to suit everyone’s needs.
PSC Partners has developed a support group leader guide that provides ideas that may be helpful as you begin to think about starting your own support group.
View or download the Support Group Leader Guide.
It is important to note that PSC Partners Seeking a Cure does not endorse local support groups. PSC Partners Seeking a Cure accepts no responsibility for any information, activities, or costs associated with local support groups and does not intend to endorse such groups. Any information or advice provided in a local support group does not constitute medical or legal advice and should not be relied upon as such.
Before making any medical decisions, always check with your doctor.
Common Questions
The exact cause of PSC is not known, but it is believed to be a combination of environmental factors and genetics. One hypothesis is that an abnormal response to a bacterial or viral infection causes changes in the immune system that result in inflammation and scarring in the bile ducts. PSC is not contagious; it cannot be passed from one individual to another.
PSC currently has no cure, so treatment focuses on disease management and complication prevention.
What you should expect to hear:
• Monitoring strategy (labs, imaging, MRCP/ERCP)
• Management of symptoms (itching, fatigue, infections)
• Treatment of complications (bile duct strictures, cholangitis)
• Consideration of clinical trials
• Discussion of liver transplant as a future pathway (if disease progresses)
High-value insight: Ask whether they are tracking emerging therapies or trial eligibility
PSC can affect anyone at any age. About 1 in 10,000 people will develop PSC. IBD is associated with PSC: over 75% of PSC patients have IBD, and about 5% of IBD patients have PSC. About 60% to 70% of PSC patients are male. It is typically diagnosed between ages of 30 and 60, and is rarer in children and teens.
PSC is typically diagnosed after abnormal blood tests of liver functioning or PSC-related symptoms (e.g., fatigue, itching, jaundice) suggest a need for follow up. Imaging via MRCP, a specialized MRI of the abdomen, is used to look for strictures in the bile ducts to confirm PSC. If strictures aren’t visible, a diagnosis of small duct PSC may be made based on other evidence. Occasionally, ERCP and/or liver biopsy are also needed, particularly when autoimmune hepatitis (AIH) is also suspected. There isn’t a single blood test that can diagnose PSC. The whole medical picture, including your medical history, lab results, symptoms, and imaging are needed to piece things together. If you ever feel unsure about your diagnosis, it’s okay to ask for a referral to a specialist or a center with experience in PSC. Getting that extra expertise can help give you clarity and confidence in your care.
Some people have no symptoms, while others experience a range of symptoms at any stage of disease, including:
- Itching
- Fatigue and/or brain fog
- Sleep issues, including sleep disturbances and night sweats
- Abdominal discomfort or pain, particularly in or around the liver
- Jaundice (yellowing skin or eyes) in later disease stages
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