It was an awe-inspiring, incredible feeling being in a room with 22 different patient advocacy groups from across the world when I attended the 2025 International PBC Summit. Being amongst people that have the same rare autoimmune disease that you have feels comfortable. And it feels safe.
Sometimes it can be difficult connecting with people when sharing your story and journey with primary biliary cholangitis (PBC). For example, when I express that I experience chronic fatigue, most people just tell me they are always tired too. But chronic fatigue due to an autoimmune disease or another disease is quite different from feeling tired all the time. Being amongst people who truly understand how you feel every day living with the same disease feels very comforting.
Gaining an international perspective
The PBC Foundation serves the global population of patients living with primary biliary cholangitis, which is what first drew me to becoming involved with the community. At their yearly International PBC Summit, the Foundation always puts the patient voice front and center. This year they were able to invite more patient advocacy groups than ever before. They had people from the U.S., the Netherlands, Botswana, Spain, Germany, Brazil, Sweden and many other countries around the world. I really enjoyed getting the opportunity to hear about the PBC experience from different parts of the world, and learning about how others live with PBC. I really thought it was interesting that in Portugal, PBC is actually called “CBP” in Portuguese.
The International PBC Summit made me realize that I am lucky to live in the United States. I have access to new medications through the Food and Drug Administration (FDA) before other countries have access to medications. And not all countries have an organization that regulates pharmaceuticals, the way I have the FDA. I learned that some of the new PBC medications that have been available to U.S. patients for several months are still not available for some patients in certain parts of the world.
I am a firm believer in the fact that we as patients are better together. We each have our own unique but shared experience regarding PBC. And the best way we can advocate for the disease and all of the patients affected by PBC is by learning more about each other. We should learn what needs must be met, and where — and then put forth effort to help meet those needs. That way every patient with primary biliary cholangitis receives the best possible care.
Finding my people
At the Summit, I was able to find time to sit down with Mo Christie, the Head of Patient Services for the PBC Foundation. In my interview with her, three words she said that really have stuck with me is “Find your people.” Whether you just were diagnosed with PBC or whether you are waiting for a liver transplant because of PBC… finding connection and support is one of the best ways of dealing with this rare disease.
It is easy to feel alone when you have a chronic rare disease. But once you meet someone else with PBC, it’s like you become friends for life. I’m still super close to the ladies I met in 2020 right after I was diagnosed. And I was just thinking, it’s kind of funny that the Summit is only four days long, we are only with each other for four days — but in that short time, we became friends. We see each other, we hear each other, and we understand each other. And that means more to me than anything. I have found my people.
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