If you or a loved one have been diagnosed with primary biliary cholangitis (PBC), you might benefit from sharing your experiences with others affected by the disease. By connecting with people who are facing the same daily challenges, you gain access to a support system outside of friends and family, which can be difficult to find when dealing with a rare disease.
A rare, autoimmune disease, PBC affects the small bile ducts in the liver. It is most commonly found in women aged 35-55 years and has no specific cause. Genetic and environmental factors are thought to play a role, but more research needs to be done to say for sure. There is no cure, but there is treatment available to slow the progression of the disease and help manage symptoms. Symptoms, including fatigue, pruritus (itchy skin), stomach and joint pain, brain fog and jaundice, can have a significant impact on quality of life.
As the bile ducts progressively break down, the bile collects in the liver, damaging liver tissue and leading to fibrosis and cirrhosis. Some people with PBC may eventually suffer liver failure, which requires a life-saving liver transplant.
Benefits of joining a support group
Emotional support, a feeling of solidarity and practical advice are just a few of the benefits of becoming part of a community of people with PBC. This kind of support can be a lifeline when you are struggling to cope with daily challenges.
In addition to the medical support of your healthcare team, you may also benefit from engaging with people who are living with the same symptoms, quality of life issues and concerns for the future. You can share your personal experiences of the impact on your family and work life, ask for advice on how to ease the constant itching and give back by supporting other community members.
Finding a support group
Support groups for people living with PBC can be found on a local level or national level, either in person or online. There are so many excellent resources and people available to support you as you navigate the challenges of living with a chronic liver disease.
Ask your doctor for some recommendations and then do some research online to see what suits you best. See how interactive you wish your participation to be. It’ll depend on how you’re managing and what kind of support you are seeking. Reading other patients’ healthcare journeys can be a good place to start. There are online forums and Facebook groups as well as local groups that meet regularly.
Here are a few of the many online resources available that you might like to look into:
Living with PBC offers a comprehensive list of support groups, websites and information on research into PBC designed for patients.
The American Liver Foundation created a Facebook group called Life with PBC, where patients and their families can interact with others with similar struggles.
PBCers is a site that has a range of information and resources, including a page to help you find support groups local to you.
