Rare???? What are these chances?

[Gaspereaux]

So…after my recent diagnosis last fall I posted a short description from the liver foundation in Canada and attached it to a pic and posted it to Facebooks so that I did not have to continually explain what I had, etc. I received a response from a former student who was diagnosed with PBC 5 years ago in Ontario, Canada. However, this is the interesting part….

Our community has a population of roughly 700 people….SEVEN HUNDRED….very small, rural area on the northeaster coast of New Brunswick. If the ratio is correct….1 in 10,000, it is quite intriguing to have found this young lady. Years ago, we lived about one mile from each other.

Wondering if it is a lot more common than we think, but that it is not well known, and is often only caught when several symptoms appear, not just fatigue.

[DonnaBoll Administrator]

Thanks for the interesting post! the latest I can find is that about 65 out of 100,000 have PBC. I often think of how many more might have it if only checking routine livel panel lab work was part of the a 'well woman' check up. I think you're right about not being diagnosed. Even those who might present with fatigue are usually dismissed as being too busy with their jobs or children. All too often I have known women who have had elevated LFT's and no one knew what to do with these results. I'm so glad you found each other! now a friendship has been made..

[Candy12]

I have a similar experience in my area of the UK, less than a mile away. Someone I met out walking was telling me about how she feels all the time , but couldn’t get any answers from her doctor. I often thought she was describing PBC or at least autoimmunity. After a couple of years and no answers she began paying for tests and has just been diagnosed with PBC. Yet it’s rare… is it on the rise…. or is the knowledge finally getting through to GP,s.

[Gioielli5 in reply to Candy12]

I believe the chances of getting PBC are 1 in 1000 not 1 in 10000.

[DonnaBoll Administrator in reply to Candy12]

Sometimes even a small exchange between strangers can lead to someone knowing to pursue their symptoms. You made a difference for her! PBC doesn't seem so rare when we are the ones who are diagnosed though, does it?! Education for ourselves and others around us can make even the smallest of difference in lives.

[Zelda5]

I remember reading an article in a magazine that autoimmune diseases were on the rise. That was many years ago and before my Hashi diagnosis. Do you think that's true for Pbc too, even if it's still considered rare. Seems like, I remember Dr. Jones in a Q&A mentioning that he was seeing milder versions than what he had seen early on in his practice.

[Readlots]

Years ago my daughter was diagnosed with type 1 diabetes. The nurse told me that they see clusters of kids from the same school often following a flu outbreak some months before. So I’m not surprised to hear about clusters of PBC. I live in a market town and worked with someone else with PBC .

I’m sure Covid -19 is triggering lots of autoimmune responses. That’s why we’re seeing the increases in things like PBC, T1 diabetes etc.