Diana
- Year diagnosed with PBC: 2014
- Location: Arizona
Patient Stories / Diana
This is my story
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.” The previous term “primary biliary cirrhosis” led some people to believe PBC was alcohol related. The current name is more medically accurate and less likely to cause misunderstanding.
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.
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 Intercept Pharmaceuticals.