Location: Arizona
Year diagnosed with PBC: 2014

My name is Diana. I found out that I had primary biliary cirrhosis* (PBC) a year after my daughter Nishele was diagnosed with it. Now I am doing whatever I can to treat the disease so I can spend a lot more time with my family.

*Interview conducted in April 2015, before the widespread adoption of the term "primary biliary cholangitis."

This is my story.

I am retired from factory work, but now my job is to take care of my parents, who are in their 90s. Family is very important to me, and I feel good about being able to help them every day. Besides caring for them, I also like spending time with friends and being active.

Having PBC makes me worry that I won’t be able to lead the life I want and spend time with family. Since my daughter also has PBC, she sends me articles and information about the disease. I use that information to work with my doctors to make sure I am getting the best care possible.

“I talked to my doctor about the fatigue and he said, ‘Well, you’re not getting any younger.’ I thought, I’m not going to let somebody tell me that.” — Diana

Sometimes it feels like I have to work really hard to make sure my doctors are being proactive about my PBC. Back when I was first having symptoms, long before my diagnosis, it seemed like some doctors weren’t paying attention to my complaints.

Now, before I go to see my doctor, I prepare questions to ask him using the information my daughter sends me about my PBC. I take my medicine and work with my doctor to manage my disease. I still have a lot to look forward to, and I don’t want my PBC to get in the way.

All participating parties, including patients, physicians, and experts, were compensated by ICPT.


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