Location: Minnesota
Year diagnosed with PBC: 2013

My name is Nishele. I have a daughter in college, a son in the Marines, and a full‑time job teaching at the university level, and I am living with primary biliary cirrhosis* (PBC).

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

This is my story.

I treat my PBC by taking my medicine every day and doing my best to lead a very healthy lifestyle. I also fight my disease by reading everything I can to learn as much as possible about the disease. Coming from an academic and scientific background, I find it helpful and comforting to stay up to date on all the latest research that is being done on PBC.

“I think you just have to be determined and just be proactive about it... [I] consistently research as much information as I can and try to find the answers... I think the knowledge is power.” — Nishele

Unfortunately, I am not the only one in my family who has PBC. My mom was diagnosed with the disease a year after me. She had elevated liver enzymes for months, but doctors didn’t test her for PBC until she told them that I had it. I find that there is a lot of misinformation out there about the disease. There is a great need for more education and awareness for both doctors and the public.

“I find that most friends and family don’t understand anything about this disease... Any time I can find articles or websites that seem to be understandable...I forward them to friends or family so they can learn more about the disease.” — Nishele

When I talk to people about PBC and they hear that it can lead to cirrhosis, they often assume it must be caused by alcohol abuse. So I always follow up by saying, “It’s an autoimmune disease of the liver.” I also think that the word “cirrhosis” is misleading because most people who have PBC do not have cirrhosis. That only happens if the disease progresses to the last stage. I would like to help spread awareness of PBC so that people can better understand the disease and what it means for those who have it.

For now, I am doing what I can to treat and manage my disease, and I am focused on living my life to the fullest.

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


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