Words of Advice for Newly Diagnosed PBC Patients

Primary biliary cholangitis (PBC) is a rare autoimmune disease that affects the bile ducts in the liver. The body produces too much bile to safely pass through the bile ducts and that causes destruction to the bile ducts. This leads to liver fibrosis, liver cirrhosis, and ultimately the need for transplantation or even death. ¹

PBC is a diagnosis I have had for almost 6 years now. Getting diagnosed was a life-altering moment for me. Over the course of time, I have learned some really valuable information that can help patients who are newly diagnosed with PBC.

1. PBC is not a death sentence.
2. Science based information is of the utmost importance.
3. Joining support groups is very beneficial.

An emotional diagnosis

After I received my diagnosis, in December of 2019, the first thing I saw on Google when I got home from my gastroenterologist appointment was that I would be dead in 10 years. That would mean I would be dead by 41 years old. I immediately fell to pieces and cried for days. I think what made it worse was that my diagnosis was right before Christmas and I had to tell my entire family on Christmas Day. I was really scared and I thought this was the end.

A few days after processing this diagnosis, I started to look on Facebook for PBC specific support groups. I ended up having a phone call with a woman that had 40 or so years of knowledge regarding PBC. She told me that PBC is no longer a death sentence. Medications had come out to help treat and slow the progression of destruction caused by PBC.

And for the first time, I felt hope. I decided at that moment that I was a warrior and I was going to fight against primary biliary cholangitis. And now in the year 2025, there are even more options available for patients to help save lives.

Taking control of the uncontrollable: Learning about PBC

Early on, I learned that the best way to take control of an uncontrollable situation was to educate myself about what was truly happening to my body. Having a healthcare background, I knew I needed to look for science-based articles and guidance. I saw that what was on Google was outdated information, so I started to look for the truth.

I found the PBC Foundation, a nonprofit based in the United Kingdom that provides support to patients living with primary biliary cholangitis. They have weekly talks featuring some world-renowned doctors who specialize in PBC. I tried to watch every video and read every article I could. By the time my first hepatolgist appointment came around in March of 2020, I really learned a lot. I remember my doctor being surprised at how much I knew regarding this disease. Since then, I try to stay on top of the newest research and the newest information coming out from clinical trials and research studies. Education is how I take control of PBC.

You are not alone: Find support

Finding that support group and finding the PBC Foundation, saved me. With PBC or any sort of chronic illness, it’s common to feel alone. Sometimes you are not sure how to talk to your loved ones about what you are experiencing and how you are feeling because you do not want to worry them...Or because you fear they may not understand. I highly recommend finding a support group to learn from other patients who “get it” because they experience it too.

It is also an empowering feeling hearing other patients' stories and journeys with PBC, especially those who have been living with the disease for 50 years. It helps you see that you are not alone, and that others have been there and have felt the same fear and worry.

Experienced patients also come with advice and wisdom to help you navigate this new diagnosis. The best feeling of all is meeting another patient living with primary biliary cholangitis in person. It is almost an indescribable feeling of compassion, understanding, and love.

Focus on the next steps with PBC

Being diagnosed with PBC is scary, and it is okay to feel scared and allow yourself to have those emotions. It is part of being human. But it is more important to not allow yourself to stay in that mindset for too long but rather start focusing on the next steps that come with any diagnosis. PBC is not the end.