Year diagnosed with PBC: 1976
My name is Connie. I’ve been living with primary biliary cholangitis (PBC) for more than half my life—but even with PBC, my life has been a fantastic adventure filled with wonderful people, great memories, and lots of travel.
This is my story.
Throughout my 3 pregnancies, I started getting migraines, experiencing brain fog, and feeling very fatigued and itchy. It wasn’t constant, so I just related it to raising a family and being a busy mom. When my youngest son was 4 years old, I was itching myself to pieces, but I once again wrote it off as being tired from raising kids—which is what many doctors at the time did as well. When the symptoms started affecting my sleep, I couldn’t ignore them anymore. My doctor tried to help me find answers, but he was stumped.
“I want you to know how important it is to advocate for yourself. In the end, it’s your body, your health, and your PBC.”— Connie
In 1976, when I was in my 30s, my liver enzymes began rising. When seeing my dermatologist for another matter, he saw these results and referred me to a gastrointestinal (GI) doctor after I told him that they had been high for a while. The GI doctor ordered a liver biopsy. He tried to assure me that my numbers “weren’t too bad,” but knowing how serious liver disease can be, I called every medical center in Boston until I found a well-regarded hepatologist.
The hepatologist did another liver biopsy. When the results came in, he sat me down and explained that I had primary biliary cirrhosis, or PBC (the name changed to cholangitis later). He told me that PBC is a progressive and chronic autoimmune disease that affects the bile ducts of the liver. According to him, I had come to the right doctor and the right place—it turned out he was right, because he was the leading expert and researcher in PBC!
My hepatologist said that I’d need to take medication and explained that while treatment would never cure my disease or relieve all my symptoms, the goal was to try and slow the progression of the disease. I was on a few treatments over the years that got my itching mostly under control. The brain fog was still there, and the fatigue was on and off, but treatment at least seemed to keep my progression stable; I got my liver enzymes checked every 3 to 6 months, and the numbers were in a good range.
“It feels like PBC cracked open the door to my immune system, because I’ve been diagnosed with Sjögren’s syndrome, Crohn’s disease, and rheumatoid arthritis. But I’m coping with these problems, and I think my fight against PBC helped prepare me for these new challenges.” — Connie
In 1987, we moved to San Diego, where I went to work for the National Liver Foundation. I got the chance to work with patients one-on-one, both through the National Liver Foundation and by attending a support group. All this work helped me realize I can make a difference in people’s lives. Through helping others, I helped myself.
Even when we were in San Diego, I kept my hepatologist in Boston updated on my condition and continued learning about PBC. I saw him for close to 30 years until he passed away unexpectedly. For decades, he was both my teacher and my source of inspiration. From the moment I met him, he made me feel both validated and empowered: validated that the symptoms I was having were legitimate and not in my head, and empowered because he made it clear that no one understood how I was feeling better than me.
I found a new doctor who is very proactive and invested in his patients. I’m on the right track, which, for me, means nothing has changed with my PBC. The number one goal is still to slow my disease progression to the best of my ability. My symptoms haven’t gone away; they come and go in regular clusters, so I modify my activities based on how I’m feeling. If that means I do less or back out of commitments, then so be it.
All participating parties, including patients, physicians, and experts, were compensated by ICPT.