What do you wish others knew about PBC?
There are plenty of misconceptions and a lot of unknown information about primary biliary cholangitis. What's something you wish people understood about the condition, or your personal experience living with it?
I wish they knew how serious us patients are about PBC. First, I think when they ask what it is ... the words are too big or something since they've never heard about it. And if they ask and I tell them how I'm feeling at that moment... they give that look like I'm a whiney , wimpey kid who wants a pity party or something like that. Or they'll say....but you look so good! (on the outside - yeah)
Hi there! My name is Bridget, and I work at Health Union, who owns and operates this community. We're currently looking to recruit some folks living with PBC to participate in a video interview on site. This would take about an hour of your time and be a paid opportunity. Please email me bridget.gawinowicz@health-union.com if you'd like to participate! I hear you. Most people have never heard of it, so they either tune out when the medical terms start or they assume it’s not a big deal because it’s not something common like diabetes or cancer. And the “you look fine” thing can be so dismissive without them even realizing it because they don’t see the fatigue, the discomfort, or the stuff going on internally. Sometimes you just wish people would trust what you’re saying about your own body and show compassion even if they don’t exactly understand the pain you’re experiencing. -Latoya (Team Member)
My husband had cholangiocarcinoma in 2004. We were blessed to find it early. Dr. Attila Nakeeb at.IU.hospital performed 11 hour surgery after liver Specialist Dr Paul Kwo conferred with him. This was followed by five years of chemo (gradually reduced). At that point he was considered cured. He passed after 18 years from COVID. The cancer never came back. His oncologist was Dr Patrick Loehrer at.the Indiana cancer pavilion at IU hospital.
I’m so sorry for your loss 🤍 Losing him to COVID after everything you both endured just feels so unfair. But it really sounds like you both fought hard and had an amazing medical team in your corner. I’m really glad you shared this. His story matters, and so does yours. Be encouraged, Latoya (Team Member)
I wish people understood that this does not have not have anything to do with alcohol consumption.
That is a very common misconception and PBC. Some people automatically associate any liver disease with alcohol because that’s what they hear about most often. Raising awareness about the nature of PBC would definitely help clear this up. -Latoya (Team Member)
