Location: Massachusetts
Year diagnosed with PBC: 2013

My name is Susan, but everyone calls me Sue. My husband and I live in a small town about 2 hours from Boston, and our kids, who are 30 and 32 years old, live close by. I have primary biliary cirrhosis* (PBC).

*Interview conducted in March 2015, before the widespread adoption of the term “primary biliary cholangitis.”

This is my story.

Unfortunately, my diagnosis happened as a result of a really sad event in my life. At the age of 74, my vibrant and energetic mother woke up one day and noticed that her stomach looked bloated. Four months later, she was gone. Her death from ovarian cancer was a huge shock to me and, after she passed, I decided that I wanted to make sure my kids were provided for in case something should ever happen to me.

“... I contacted a local life insurance company and said, ‘I’d like to take out a policy.’ ...then the letter came that denied my insurance, and it said, ‘Contact your doctor right away.’” — Susan

So I went to my doctor and was referred to a gastroenterologist for follow-up tests that led to a diagnosis of PBC. The insurance company had denied my coverage based on elevated LFTs. At the time, I didn’t even know what that stood for. The specialist explained that it stood for liver function tests, and that one of the things they test for is called alkaline phosphatase (ALP).

I couldn’t believe I had been denied coverage—I have always been really healthy. I’ve never smoked, I don’t drink—it didn’t make sense.

“I thought to myself, ‘This has to be a mistake.’” — Susan

Now that I know I have PBC, I do what I can to treat my disease. I started taking medicine the very same day that I got my diagnosis, and I make sure to take it every day. I also go to regular follow-ups with my doctor to check my ALP level.

“I just started keeping a notebook [with all my test results], and every time I go see the gastro person...I take notes and I always ask her questions.” — Susan

Being blindsided with a chronic disease was hard, but I’ve learned to make the best of my situation. I’m a kindergarten teacher, and now I say to myself something that I’ve been saying to my students for years: “You get what you get and you don’t get upset.” I know I didn’t cause my PBC, and I don’t think it’s helpful to stress out about it. My doctor tells me that I am doing a good job of managing my PBC, and I trust that I still have a long life in front of me.

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


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