What’s better than being in warm and sunny Arizona? Getting to learn alongside the amazing primary biliary cholangitis (PBC) community while there!

The PBCers organization held its 2024 Patient Education Conference in Phoenix from April 11-13, 2024. This year, the conference’s theme was “Empowering Connections in PBC.” I truly cannot think of anything more important. Connections are the foundation of the rare disease experience; through connections with legislators, policymakers, family members, researchers, and other community members, we learn more about rare disease, advance research, and build strong pillars of support. 

As a speaker for this year’s conference—I both held a session on the importance of storytelling and ran a workshop to put those tools into action—I was incredibly excited at the opportunity to build my understanding of PBC while also encouraging others to embrace the power of their own voice. 

Empowering Voices: Crafting Your PBC Narrative

On the first night, we came together for a welcome reception and learned about My Intent. During the conference, we picked one word that we wanted to define our journey (mine was “Belief”) and crafted that word onto a bracelet that we wore for the rest of the time. 

The first full day of the conference began with a talk from Dr. John Vierling on the diagnosis and treatment of PBC. Dr. Vierling’s insightful talk covered the key diagnostic criteria for PBC—including a newer focus on gp210 and sp100, which are PBC-specific ANAs—and ways to monitor liver fibrosis. He also spoke about the elafibrinor and seladelpar clinical trials and what the diagnostic criteria were for Overlap Syndrome with Autoimmune Hepatitis. 

Next up was Jess Schnur, the Donation Support Services Coordinator for Lifeline of Ohio and a patient with PBC herself. Her session centered around how patients can best form relationships with their doctors and care teams—and what tips and tricks could help with navigating appointments. In her talk, she offered several questions that patients can ask their care teams, as well as how to follow up after testing. What I found especially interesting was the discussion on palliative care. Many people often falsely believe that palliative care is death care, but Jess refutes this. Instead, she says, palliative care is valuable healthcare that more people should consider as part of their care plan. 

My first session followed: “Empowering Voices: Crafting Your PBC Narrative.” During my session, we discussed how patients and care partners can amplify their voices. I explained that:

• You shouldn’t try to make your story perfect. Perfection is unachievable. Instead, focus on the beautifully human, imperfect parts of your story. Authenticity is key—so be yourself. 
• It’s important to pay attention to detail. When you’re telling your story, ask yourself: “Does this detail add to my story? Is it necessary for people to understand what I’m saying?” Adding too many details can make your story difficult to follow. So keep it detailed, but make sure that the details enhance your story.
• Comparison is the thief of joy. Your story is yours and no one else’s. While it can be tempting to compare your experiences to others, remember to lean into what is most important to you and what you have actually gone through. 

After lunch, I held a workshop for patients at the same time as Lorraine Steihl, the CEO of the American Liver Foundation, held a broad discussion for care partners. I was so impressed by everyone in the workshop and their willingness to be vulnerable, be authentic, and share their stories.

The day concluded with Dr. Eric Gershwin’s discussion on the unmet needs in PBC and how we can solve them, Dr. Elizabeth Carey’s talk on what to expect when you’re expecting a liver transplant, and a doctor Q&A session. One thing Dr. Carey noted was that some people will put off a liver transplant thinking that they will have a better option in the future, but she encourages people to take the liver that they are offered when they are offered it, as statistics say that a better option often does not come around in a timely manner. 

PBCers Day 2

Day 2 was just as fun and informative as the first! Our first session, led by Dr. Puneeta Tandon and PhD student Emily Johnson, was about mediating the impact of stress and increasing wellbeing in chronic conditions like PBC. They noted that instances of stress are exceedingly common in people with chronic conditions, necessitating interventions to reduce the stress. Dr. Tandon led us through a relaxing breathing exercise and Johnson later took over to explain the results of a wellbeing intervention in PBC. Their session was followed by PBCers organization updates. 

Dr. Mark Swain then spoke about fatigue in PBC. He noted how many people with chronic illnesses, including PBC, often hear that their fatigue or other symptoms are “in your head.” Yes, he explained, it is in your head—but not in the way that you think. Dr. Swain explained that people with PBC have changes in their brain structures and function that are linked to inflammation in the liver. 

After lunch, Dr. Nadege Gunn spoke about clinical trials: the importance of diversity and considering the needs of people from diverse backgrounds, patient rights and responsibilities, ethical considerations, and how patients can speak with their physicians if they wanted to get involved. This was followed by a panel discussion of three patients who spoke about their experiences in clinical trials, where they encouraged others to get involved.

Finally, Dr. Marlyn Mayo discussed chronic itch in PBC and how to manage it. She noted that one unique feature of liver-related itch is that it often appears on the palms and soles.

Overall, the PBCers Patient Education Conference was a great way to unite the PBC community while increasing education and awareness.