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PBC Voice
Using My Voice and My Story to Advocate for Others With PBC and—in Turn—Help Myself

Released: December 03, 2024

Expiration: December 02, 2025

Carol Roberts
Carol Roberts,
Activity Information

Activity

Progress
1
Course Completed
Key Takeaways
  • Primary biliary cholangitis (PBC) may present in many different ways and may be overlooked until overt liver symptomology is noted.
  • Support and advocacy from groups like PBCers Organization is important for persons with PBC.

Those of us with rare diseases such as primary biliary cholangitis (PBC) sometimes are overlooked by healthcare professionals (HCPs). They are not familiar with our disease. But I feel it’s important for HCPs to hear the stories of persons with PBC, stories about the pruritus and fatigue. These are common symptoms of PBC, and in many cases, those stories show how HCPs first attributed these symptoms to other sources. That is often the plight of patients with PBC.

My Story
There was nothing “common” about my story. I was diagnosed with PBC in 1999 while being assessed for a hysterectomy. I hadn’t been feeling well for quite some time but attributed my symptoms to my gynecologic problems. When I visited my OB/GYN to be evaluated for surgery, I brought his attention to my eyes, which looked “funny” to me (they were actually quite sclerotic). I was also jaundiced from head to toe, which I didn’t realize at the time. I had gotten so used to seeing myself that I didn’t realize my appearance was abnormal.

He hid any alarm he may have felt and suggested we run a liver panel, which would also be needed for my preoperative workup. My liver panel was quite aberrant, including a serum bilirubin of 3.8 mg/dL (normal bilirubin is 0.1-1.2 mg/dL). A subsequent liver biopsy revealed that my liver was already cirrhotic; during his workup, the hepatologist also had the foresight to order the tests to verify my diagnosis of PBC.

The Path to Diagnosis
Did I have other symptoms of PBC? In retrospect, I did itch, particularly along the lateral aspect of my thighs. I thought that I was just rubbing them gently to relieve the itch, but my thighs were constantly bruised (as a result of my rubbing/scratching but also because of my liver disease). My children referred to me as the “bug woman” because if I heard a mosquito or a gnat in the house, I would hunt it down obsessively so I wouldn’t get bitten, attributing the bites to my itching. You can see how, like many people with PBC, the symptoms of itching affected my quality of life.

I was prescribed ursodiol, the only approved medicine for PBC at that time. As other treatments developed, I was not a candidate for many because of the extent of my liver disease.

After my diagnosis, a friend brought an article about the PBCers Organization to my attention. I attended my first convention with the Organization in 1999, shortly after my diagnosis. That first year I sat in the back row, just listening and taking it all in.

When I returned the following year, however, one of the officers of the organization recognized me and introduced me to other officers and board members, and I’ve been actively involved ever since—so active that the founder of the PBCers, Linie Moore, tapped me early on to replace her as head of the organization.

The Path to Treatment
Several years later, we learned she was very ill and the transition took place. The timing couldn’t have been more difficult for me: In 2021, in the middle of the COVID-19 pandemic, and while I was moving the organization’s headquarters from Texas to New York State, my liver decompensated. I developed a large ascites related to my failing liver and had to undergo paracentesis, at first every 2 weeks and then every week. They removed 6 liters of fluid each time but after 2 days, I could feel the fluid start to reaccumulate. I finally went into acute kidney failure, as a result of the ascites. The kidney failure, however, moved me to the top of the list for receiving a new liver—I went onto the list on Monday and received a liver transplant on Friday. Later, it was shared with me that I had been days from dying. I had to stay on dialysis for several weeks after the transplant so that my kidneys could resume functioning correctly.

As soon as I was able, however, I returned to my work with the PBCers and that work has become my purpose in  life.

The Path to Support
The PBCers started as a support group in 1996. At that time, there was no way of connecting virtually, so a group of people with PBC decided that they needed to meet each other. The first year more than 200 people attended—that’s how desperate people were to find information and community. Since many HCPs were (and still are) unfamiliar with PBC, people were not receiving support from their healthcare communities, either.

By 1999, attendance had grown to 350 people. That year, a large survey completed in conjunction with the American Liver Foundation. This survey supplied needed background information for researchers.

Eric Gershwin, MD, PhD, who had been a prominent researcher in the field of PBC, likes to say it was the start of everything—that is, significant research that has benefited people with PBC. Our membership has now expanded to more than 6000 persons with PBC.

PBCers stands for Primary Biliary Cholangitis e = education, r = research, s = support. Under my leadership, the mission of the group now includes support, advocacy, and education. We try to connect our members to clinical trials, when appropriate. Our website allows people to find information about the disease, current treatments, and treatments that are being researched, but also to find each other.

Since I am relatively “well” now, I feel it is my job to provide a mouthpiece for others who are experiencing much more dramatic disease—to make sure that their stories and the burden of the disease remains visible for HCPs. One thing those of us who have had liver transplants must remember, too, is that PBC can recur.

While acting as President, my message is that new treatments are needed and that we need to keep our disease in the spotlight. We need treatments that address all aspects of PBC, including symptoms and impact on quality of life. That is how I contribute to the lives of our members and help researchers make advances in the field—advances that may affect my outcome as well.

The Path to Learning More
We will delve deeper into the topic of PBC pruritus care in an interactive symposium at AASLD 2025, focused on elevating the goals of PBC management. Join expert faculty in person or via live simulcast to hear them share perspectives and recommendations for both normalization of biochemical markers and improvement in symptom burden.

Join the Conversation
How do you connect your patients with PBC to support, treatment, and trials? Join the conversation by posting a comment below.