In this series, you will hear from three patients about their individual journeys with PBC, including the burden of common and not-so-common symptoms, diagnostic delays and how to overcome them, and personal experiences with various treatment approaches. Importantly, you’ll learn about self-advocacy, finding your ideal clinical team, the role of shared decision-making, how to meet social/family challenges, and tips for living your best life — even with a rare autoimmune disease like PBC.
Aliya Gulamhusein, MD, MPH, FRCPC
Professorship in PSC Research
Assistant Professor and Clinician Investigator
Toronto Centre for Liver Disease, University Health Network
University of Toronto
Toronto, Canada
Tiffany Brown
PBC Patient
Kate Parfrey, AGACNP-BC
Nurse Practitioner
Cedars-Sinai Comprehensive Transplant Center
Hepatology
Los Angeles, CA
Maria Morais, RN
PBC Patient, VP Patient Advocacy
Canadian PBC Society
Ontario, Canada
Carolyn E. Legaspi, NP
Hepatology
Cedars Sinai Medical Center
Los Angeles, CA
Alyson Robertson
PBC Patient
Webisode 1: Is it PBC?
As a rare disease, primary biliary cholangitis (PBC) is not on every clinician’s radar. You may have been bounced around to various doctors to figure out what’s going on with your extreme fatigue, relentless itching, so-called “brain fog” and/or abdominal discomfort. Whether you have already been diagnosed with PBC or are experiencing symptoms that have been chalked up to something else, don’t be afraid to ask your clinician questions, including, “Could this be PBC?” Remember, YOU are the most important advocate for your own health!
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Webisode 2: The Diagnostic Journey
Now that primary biliary cholangitis (PBC) is being considered, what are the methods for diagnosing it? In this second webisode, our three patients talk about how they were each ultimately diagnosed during their journeys with PBC. Fortunately, in most cases, it’s an easy and noninvasive process. Here you’ll learn about the antimitochondrial (AMA) blood test and other diagnostic strategies that can confirm a PBC diagnosis. Some patients feel relief after diagnosis because it takes the mystery out of symptoms and illuminates the path forward. Others initially react with fear and despair knowing they have what is currently an incurable condition. The good news is effective treatments are available to significantly slow down PBC and improve quality of life.
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Webisode 3: PBC Treatment: A Shared Decision
The year 2024 was very good for primary biliary cholangitis (PBC) treatment. Two new agents were approved in the United States that not only act on the disease process itself, but can reduce symptoms, especially itching. For some, the foundational treatment, ursodeoxycholic acid (UDCA) is very effective, but unfortunately nearly 40% of patients have an incomplete response to it. In this webisode, our patients share the treatments they have been on – including which were most effective, which had bothersome side effects, and their prospects for using newly-approved therapeutics.