Ask AI
Back Back

Finding Relief in My Diagnosis and Hope for the Future: My Journey With PBC

Clinical Thought
Clinical Thought
See Activity Information

Released: September 04, 2026

See Activity Collection

Step 1 of 2

1 ClinicalThought 2 Complete Activity

My initial reaction to being diagnosed with primary biliary cholangitis (PBC) was relief. That relief has only grown with the recent development of new treatment options and with guidelines that focus equally on managing disease progression and symptoms. Read on to learn how the field has changed since the beginning of my 14-year journey with PBC.

Jess Harper
Jess Harper, BSN-RN
My Journey With PBC


What were my first thoughts when I was diagnosed with primary biliary cholangitis (PBC)? Relief. Did I just find out I was diagnosed with a rare disease for which there is no cure? Yes. Yet there I was, feeling relief at this mysterious diagnosis. Even now, I still find relief every day in my diagnosis. Relief in knowing others won’t be so confused or scared when diagnosed. Relief that healthcare professionals are finally being educated on PBC to diagnose it faster. Relief and hope that, in the future, more effective treatment options, or even a cure, will mean that no one else will need a liver transplant because of PBC.

Progress Since My Diagnosis
Looking back on my 12-year journey with PBC, I am amazed to see what has been accomplished in the field.

When I was diagnosed in 2014, I was presented with a dire picture. I was told I had a disease of the liver with cirrhosis in the name (primary biliary cirrhosis, which made everyone think it was from alcohol). I was also told that there was no cure, and there was only one medication for it, which does not work for everyone. I learned that a classic symptom of PBC is itching, which was, ironically, also a potential adverse effect of the sole medication for this disease.

It is also typically diagnosed in women aged 60-80 years, so there was not a lot of information for me, being diagnosed at 30 years of age. Also, it carries a higher risk of miscarriage and preterm birth. Good luck!

Since then, we have seen the name change to “primary biliary cholangitis.” Patients from around the world participated in multiple PBC Collaboratives, resulting in the development of a PBC Patient Bill of Rights. PBC has been a headline topic at the American Association for the Study of Liver Diseases annual meeting, and guidelines for diagnosis and treatment have been developed and updated. 

Of more importance, PBC is getting the attention of researchers and pharmaceutical companies. New medications have been released and more are on the way. We have made strides toward getting legislation in place to support patients in getting these medications sooner. Multiple studies are looking at the root cause of PBC and finding a cure, not just a bandage for the symptoms.

Hope for the Future of PBC
Every PBC journey is different. Age, concurrent illnesses, and time of diagnosis are huge factors in what happens for us. I ended up needing a liver transplant. My hope is that fewer people end up needing transplants as healthcare professionals recognize symptoms and diagnose faster. With more medications available, patients can promptly move on from first-line to second-line treatments if their disease progresses, helping prevent the development of cirrhosis and liver failure. 

What can we tell patients? As a patient and healthcare professional, I encourage my fellow PBC warriors to attend conferences and participate in online panels. I encourage all patients with PBC to seek out and participate in research to help push treatments through the development pipeline. In our healthcare system, you often have to be your own best advocate. I tell them to bring the information to their care team without being afraid to ask questions!

I am so proud to be part of the PBC community. We have spoken up and helped guide changes in how PBC is diagnosed and managed. Instead of treating numbers that may not correspond to meaningful physical improvement, we have seen a shift in the treatment plan to focus on overall health and symptoms.

As we move forward, I can only hope that more patients bring up these new treatment guidelines and medications and continue to advocate for themselves and others. By being proactive and speaking up, we will keep the attention of researchers and care teams to make sure all patients with PBC get the treatment and relief we deserve.

Your Thoughts
Following these landmark developments in PBC treatment, how has your approach to managing PBC changed? What do you think is the best way to approach balancing disease and symptom management? Leave a comment to join the discussion!