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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How many of you have a close relative who also has PBC?

A myPBCteam Member asked a question 💭
Spruce Grove, AB

My mother was dx with PBC maybe 20 yrs before me. But only after they stopped accusing her of being a heavy drinker. ( mom didn’t drink at all).

February 27
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Reactions
A myPBCteam Member

Hi Vicki. I also had an uncle that died of liver cancer. He was my mother's older brother. Not sure, or was never told that he had PBC first. I'm going to UCLA LIVER Institute, which is the same place my uncle was at. My aunt, his wife, said that she know the place well.

February 28
myPBCteam

How common is it to have a close relative with PBC?

It's actually quite common to have a family connection with PBC. Having a parent, sibling, or child with PBC makes you 11 times more likely to develop it yourself compared to someone without that family history. If you have a first-degree relative like a parent or sibling Show Full Answer

How common is it to have a close relative with PBC?

It's actually quite common to have a family connection with PBC. Having a parent, sibling, or child with PBC makes you 11 times more likely to develop it yourself compared to someone without that family history. If you have a first-degree relative like a parent or sibling with PBC, your risk jumps even higher — you're 100 times more likely to develop it.

Daughters of women with PBC are at the greatest risk. There's even been a documented case of four sisters who all developed PBC, likely passed down through their mother.

Your experience with your mother being misdiagnosed as a heavy drinker before getting the correct PBC diagnosis is unfortunately not uncommon. A myPBCteam member shared a similar story about facing misdiagnosis for nearly two years before finally getting the right tests and diagnosis.

The genetic link is strong, but having a relative with PBC doesn't guarantee you'll develop it — other factors play a role too. The family connection does highlight how important it is to mention your family history to your healthcare team.

February 27
A myPBCteam Member

That’s awesome that you have a great PBC team makes a world of difference
Grateful!

March 3
A myPBCteam Member

My aunt died of liver cancer. I’m pretty sure she had PBC but it wasn’t commonly diagnosed back in the 50’s. My dad had all of the symptoms and again never received a diagnosis. I’m pretty sure my older sister has it but won’t test for it. My two daughters are going through the testing bit, youngest one has been confirmed. Older sister hasn’t gone through testing yet because of insurance change. My son has some symptoms but no insurance so can’t get tested.

February 28

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