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Name: Nishele

Age: 44

Location Minnesota

Year diagnosed with PBC: 2013

My name is Nishele. I have a daughter in college, a son in the Marines, 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."

Name: Nishele

Age: 44

Location: Minnesota

Year diagnosed with PBC: 2013

My name is Nishele. I have a daughter in college, a son in the Marines, 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 the word “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.