PBC clusters: Apparently there are... - PBC Foundation

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PBC clusters

Kakey profile image
11 Replies

Apparently there are geographical clusters of PBC. Does anyone know anything about where these clusters are, or any other information about them?

TIA

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Kakey profile image
Kakey
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11 Replies
gwillistexas profile image
gwillistexas

All I can say is when I asked my hep if there is a lot of PBC in my city, he said “” a cluster”. I’d like to know who some of them are but thanks to hippa , we’re not allowed to have that info. Would be a big help though.

butterflyEi profile image
butterflyEi

There is a known cluster in the North East of England and probably other places as well.

Candy12 profile image
Candy12

Ive read various theories about clusters, there appears to be some prevalence in the northern hemisphere countries apparently, but I can’t reference it , as it was a few years ago I read it.

I also read early on that there were clusters in one area around Sheffield in the uk thought to be from the Rivelin water reservoir. Most of the clustering comes from research looking for an environmental trigger for PBC, and of course there will be familial clusters due to the genetic link.

Wocket profile image
Wocket

My hepatologist told me Scotland has a lot of cases but I have not any written evidence for this.

IAmTheGlue profile image
IAmTheGlue

When I was first diagnosed I read there were clusters around mines, places that drank well water and had mining. I grew up directly next to an abandoned mining operation. I literally played there every day.

periwinkle88 profile image
periwinkle88

I've read that there is a higher prevalence around Superfund sites, where there are/were a lot of toxins emitted into the environment. I grew up near one—an arsenic smelter. They demolished it in the early 90s and are still cleaning up the surrounding environment.

Kakey profile image
Kakey in reply to periwinkle88

Arsenic? Yikes. In the U.K.?

ETA just googled. Crazy.

periwinkle88 profile image
periwinkle88 in reply to Kakey

No, in the U.S.

JennerLayne profile image
JennerLayne

Have many on this forum done any kind of DNA testing to determine their genealogical roots? (i.e. Ancestry, 23 & Me, MyHeritage, FindMyPast, etc.) It would be really interesting to compare our ancestry to determine commonalities, as well as looking at clustered regions in the present.

Though I grew up in Ohio and moved to GA (USA), I learned earlier this year via Ancestry.com that my ethnicity is primarily Norwegian (44%), mixed with European Jewish (central and Eastern European countries 29%), Ireland (12%) and a sprinkling of Scotland and Sweden.

It has been interesting to find that certain relatives on my mother's side also suffer Autoimmune Diseases --- and all are different than mine.

Carole87 profile image
Carole87

Hi Kakey

I was diagnosed in2006 and my consultant is very knowledgeable on PBC he told me it is present in some people of Irish decent. My grandparents were Irish so it makes sense to me I have also given DNA for research the more I know about this horrible disease the better.

As far as clusters are concerned all I know is it is all over the UK you could ring the PBC Foundation in Edinburgh and ask them .

Hope you find what you're looking for.

Carole

Kakey profile image
Kakey

Thanks for all the answers guys, your replies are appreciated.

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