I was diagnosed with PBC. My mum has Lupus... - PBC Foundation

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I was diagnosed with PBC. My mum has Lupus. What are the likely hood of me developing Lupus along side my PBC

stevie1 profile image
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stevie1
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Anne123_45 profile image
Anne123_45

The fact is auto immune diseases are hereditary.. However which type you get can differ.. No one can say for sure if you'll develop lupus but you can watch out for the signs. I wouldn't concern yourself too much pbc could be your lot..

GrittyReads profile image
GrittyReads

I don't know a great deal about Lupus, but my understanding about PBC in particular (and autoimmune conditions in general) from everything I've read on here, from the PBC Foundation, from talks with consultants, and from reading medical journal articles, is that the hereditary nature - or otherwise - of PBC and other autoimmune conditions is still not clear.

I'm not aware that anyone has said absolutely that all (or some, or even any) autoimmune diseases are hereditary. There do seem to be some indications that there may be some hereditary risk in relation to PBC, but my understanding is that this is still not fully explored. Also, the whole nature of hereditary conditions is extremely complex, different conditions being carried and transferred in different ways.

So, a parent may have a condition, but a child may not receive the inheritable factors in a way that means the condition will develop. In fact: depending on the specific condition, how the specific genes for the condition are passed on, and the mixing up of genes from both parents at conception, it may be that some conditions are not passed on to other generations, while some may be: also with some conditions, the genes may lurk around for generations.

It is all incredibly complex. My understanding is that not enough is yet known to say that any one condition is hereditary ... and even if some prove to be, this does not automatically mean that offspring will develop it.

It also seems that an additional factor with autoimmune conditions, is that even if someone carries the antibodies for an autoimmune condition, certain other factors - toxins, viruses, chemical, whatever - may be the agents that turn the antibody 'on' and thus cause a dormant autoimmune condition to become active.

Vals-pal profile image
Vals-pal

Hi Stevie, I have Lupus and PBC. After exhaustive tests the conclusion is that the PBC was caused by the Lupus. I have been tea total all my life and at first I was devastated to find that I had PBC as I associated it with heavy drinking but of course I know different now. No one in my family has, or has had liver disease or Lupus to my knowledge, but my sister has rheumatoid arthritis and my brother has diabetes - both autoimmune diseases. I've had these conditions for around 25 years so have stopped trying to figure it out. It's the card I've been dealt so I just get on with it. I hope you and your Mum are doing well - she has all my sympathy as Lupus is very heard to manage. Good luck.

PBCRobert profile image
PBCRobertPartner

Firstly, autoimmune conditions are said to be genetic, not hereditary. One *can* pass on the genetic predisposition to AI conditions but not the conditions themselves (at least not PBC!).

The issue is the immune system attacking various parts of the body. What I have been told is that the immune system acts in its own right in response to a trigger. I do wonder what exhaustive tests Vals-pal had as I have *never* heard of Lupus being identified as a trigger for PBC.

So, yes there are familial links re AI conditions. No, you cannot "pass" PBC on to your kids. (as far as I know, that is the same for most AI conditions)

littlemo profile image
littlemo

Thanks for that Robert that subject is one I have been worrying about recently as I have PBC and am heading towards going on the transplant list and was wondering if I could have passed it on to my beautiful children but praying with all my might that this would not be the case. So cheers:-)