Five years living with PBC: how I’ve changed as a person

Beginning my PBC journey completely changed my life, and I look forward to the future and what’s to come for my advocacy work.
Dec. 30, 2019, was the first day of the rest of my life.

It’s hard to believe but I have officially had a diagnosis of primary biliary cholangitis (PBC) for five years as of December 2024.

Looking back on it now, I truly feel that beginning my autoimmune journey was the biggest factor that completely changed my life. The last five years have changed me as a person entirely.

Primary biliary cholangitis (PBC) is a rare, chronic autoimmune disease that primarily affects the liver. In PBC, the body’s immune system mistakenly attacks the small bile ducts within the liver, causing inflammation and gradual destruction of these ducts. Bile, a substance essential for digesting fats and removing toxins, becomes trapped in the liver, leading to liver damage over time.

Dec. 30, 2019, was the first day of the rest of my life after I was diagnosed with PBC. It was the day I started treatment for PBC.

Read more about PBC testing and diagnosis

I started taking ursodiol, which is the first-line treatment for PBC. I remember feeling hope for the first time since I received my diagnosis. Taking ursodiol was my best chance at protecting my liver and living a long life. I finally felt control in an uncontrollable situation and felt like I was taking my life back.

After I started reading about PBC, I was scared. Google told me I’d be dead in five years, which would make me 36. In time, I learned that Google was incorrect and full of outdated information regarding PBC. But at the time, it felt like a death sentence.

I felt like my time was limited, and I wasn’t ready to die. I feared leaving my loved ones and not accomplishing everything in life that I wanted to. I was too young to die. My first hepatology visit assured me that this wasn’t the end for me. And that I was more likely to die with PBC and not from PBC, which was incredibly reassuring.

Reflecting back, I never would have imagined how much PBC would affect my life. And I never would have imagined that I would become the PBC advocate that I am. In 2020,

The beginning of an advocacy journey

I started documenting my life on Instagram as my autoimmune journey progressed and led into being diagnosed with Sjogren’s disease and rheumatoid arthritis. I documented what it was like being a respiratory therapist working in a COVID-19 intensive care unit while also having multiple autoimmune diseases. That was the beginning of advocacy for me. 

I ended up having a few articles published about what it was like having these diseases and being on the front lines of a respiratory pandemic. That eventually led me to start my own primary biliary cholangitis support group strictly for diagnosed patients, which has grown to more than 1,500 patients in just over a year. And I started writing for the PBC Companion and Rare Disease Advisor and sharing my PBC journey with others.

Being a support group facilitator led to my being invited to attend the 2024 International PBC Summit. I was able to travel to Edinburgh, U.K., for the first time. Not only was I able to attend the four-day summit and learn a lot, but I was also able to do some touring and explore the city. I really enjoyed spending the day and exploring Edinburgh Castle. The city is so much different from anywhere I’ve visited in the U.S. The original architecture was incredible to see and experience in person. It truly was a once-in-a-lifetime experience for me and really set the tone and my desire to want to continue down the road of advocating for PBC patients across the globe.

All of this led to the biggest PBC advocacy opportunity I’ve had thus far in my journey. I was chosen to be the primary PBC patient advocate for the U.S. Food and Drug Administration. I went to my first committee meeting in September. I traveled to Washington, D.C., and Maryland. I represented PBC patients at the meeting regarding Ocaliva (obeticholic acid), and it was a nerve-racking experience for me. I am very much a homebody type of person, so it was very out of my comfort zone speaking in front of others. But I am really proud of myself, and I definitely learned a lot during my experience.

I look forward to the future and what’s to come for my advocacy work and the future of PBC. I’m so hopeful that in my lifetime there will be a cure for primary biliary cholangitis. And I hope I continue to have the opportunity to be the voice of patients with PBC across the world.