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Carol Roberts

Carol Roberts

President of the PBCers Organization, a PBC patient, liver transplant survivor, and patient advocate based in Rochester, NY.

Oct 5, 2026

0:00
[gentle music] My name is Carol Roberts.
0:06
Um, I was diagnosed with PBC back in 1999.
0:10
Um, at the time, I did real- found out that I was, um, actually towards the end stages.
0:16
I already had cirrhosis of the liver.
0:19
Um, at that time, the first-line treatment for PBC was just introduced as a brand name at that time, and they had never tested it in cirrhotic patients, so they said, "Give it a shot.
0:32
We'll see what it, if it works." And it worked amazingly for me.
3:45
But tell us your story first, uh, a- and then we'll head on down the road.
3:50
Okay.
3:51
Well, back in 1998, I was a stay-at-home mom, um, with two children.
3:57
One was 14.
3:58
The other was 17, away at school, um, out of state actually in college.
4:04
And I suffered from a lot of extreme itching.
4:10
Um, my children affectionately called me Bug Woman because if I heard a mosquito, I would have to hunt it down because I figured that was the cause of my itching.
5:27
Mm-hmm

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