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PBC Foundation
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Help me and answer my question please!!!

Hi Im 14 (I know you're supposed to be 16 on this website) and my mum was diagnosed with pbc at 21 (she is 46 now) and as her Daughter there is a chance that I may have it no mater how big or small so I was wondering should I get a blood test and what would be the best way to approach her and ask for one (I want a blood test to be done on me anyway as my mum has AB (-) blood which is extremely rare and I want to again see what my blood type is and then I might just ask if I can get a pbc testing at that time as well)?

13 Replies

This is the most poignant of posts. Those of us who have PBC and have daughters do worry about passing on the PBC gene.

In this day and age I beleive it is possible to test for all sorts of future diseases and in doing so we have the potential to worry ourselves sick unnecessarily. I wouldnt do it even at my age!

It will be your right I would imagine soon enough to test for PBC but it all likely hood it will be still far to early in your life for it to manifest itself . I am no expert but you need to, and you sound like a thinking young 14 years old, think this through and maybe next time you go to see your doctor discuss it with. There is no urgency although you might feel differently and be driven by a need to know basis. Certainly your mother needs to have a conversation with you and vice versa. It was handed to her from her genetic pool and it its quite possible that its in yours but similarly since you have a different gene pool it may not.

Be well and I wish you a positive outcome.


I thought it wasn't definite what causes PBC? I know they were looking into genetics being a possible cause - but I was told from my dr (and from what I've read) that there is no known cause for it as of yet. (no one else in my family has it).

Which means Emily there's a chance you don't have the gene. But I too have thought (since I was diagnosed with PBC) that I wanted to do genome testing (find what things I will develop as I get older) but have decided against it. I tend to be a worrier - and I don't want to give myself anything else to worry over. :)

I think it's great to be aware of what it is, and you see you're mom dealing with it. I think the best you can do (besides talking to your mom and your dr about your concerns) is to arm yourself with knowledge about things like the medication for it, what things to avoid (alcohol is hard on the liver, even though that's not what causes PBC, it's still not good for the liver) limit Tylenol and anything processed in the liver if you can. Just arm yourself with knowledge :)

Good luck Emily :)

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Hi Emily, I think you need to have a chat with your mum. I have had PBC for 10 years now and have a daughter. I am 61 and she is 41. As she already has a mortgage in place and life insurance sorted I suggested that she had a blood test. Thankfully she is ok. However, if she is carrying the gene in her DNA she might develop it later if it is triggered. The specialists still don't know what triggers it but it could be anything such as smoking, additives in hair dye, vaccinations who knows! I think you are still too young to have PBC and be careful about being diagnosed unnecessarily as this will affect your chances of getting life insurance, a mortgage or even traveling abroad if the insurance is too high. I should just carry on enjoying your life and keeping fit and healthy. You are probably a great help to your mum. If you do find yourself in later life experiencing symptoms - tiredness, itching, aching muscles and joints - then that may be the time that you need a blood test. You may never develop PBC so stop worrying and enjoy life. Good luck x


Hi Emily H

If you have a good relationship with your mother and you are able to talk to each other why not have a chat with her and perhaps suggest that she could come to the doctor with you. Your blood group may already be known and on your records. It would seem from all he medical information that is available these days that PBC becomes active once being exposed to an external trigger. Although there is some reason to see PBC in families it does not mean that you will progress to PBC.

Here I have to echo the thoughts of Gioielli5 and boneytoys.

Try to put these worries behind you and enjoy your teenage years, easier said than done I know but worth doing.

best wishes


I have had PBC for 13 years an nobody has ever suggested it was genetic. Nobody in my family (that I know of) has died from any kind of liver disease. I was under the impression it was an auto immune disease?


It is auto immune disease but there is evidence of a genetic link

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it is. I think it's unclear at this point what causes it.


Yes, you are correct, PBC is thought to be an autoimmune condition, but, as some autoimmune disorders can "run in families"*, there is no reason why PBC can't be considered a genetic disorder.

My specialist believes that in my case it is genetic. I was diagnosed 27 years ago, my cousin was also diagnosed with PBC the same year. Our grandmother also died from an undiagnosed liver condition. Though no autopsy was done on our grandmother, my cousin and I suspect from her symptoms, that she also had PBC.

* See the paragraph headed "Who gets autoimmune diseases?" cited at: womenshealth.gov/publicatio...


Hi Emily - I'm sorry this is worrying you and understand that you may want to know if you are at risk. You sound very wise for your young years!! I asked my own doctor about this just yesterday - Should my children be tested and, if so, when? His reply was that they do not recommend testing for AMA because it could be positive but never lead to PBC. He did recommend that if they were to have blood work it should be a routine liver function test. he stressed that the odds are very low they will develop this and suggested they start with liver function tests in their mid to late 20's if they choose to. Liver function can be done annually or as often as your doctor sees fit. Because your mom was diagnosed so young you could talk with your mom and Doctor to decide what age would be a good time for you to be tested. I suspect 14 may be a bit too young but you never know. I'll bet your mom thinks about this too on occasion so try talking with her. It might make you both feel better!

Again, chances are very low that you will get PBC so I hope your able to not stress over this. Enjoy being 14!

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Hi Emily,

The chances of you having it are so very, very small that the doctors may nicely refuse to test for it unless you've got symptoms or medical conditions that would push them to look further. If you are healthy, I wouldn't worry at all. However, if you're really, really concerned, maybe ask you mum's doctor and I'm sure they will put your mind at rest. But I would bet quite a lot of money that they will be so unconcerned, that they will refuse to test.

Blood groups are interesting. But complicated. There's several different classifications and the ABO system and Rh system are just 2 of the classifications. There's more - it's much more complex than you think. Seem to remember there's over 30 different blood groups. If you're doing Biology, you'll learn a little bit more over the next couple of years. Maybe read up a bit about it. Most people only know about the ABO and Rh classifications because, unless they end up say in hospital and need a transfusion, they don't need to know any more.

Your mum may have a record of your blood group, from blood that almost certainly would have been taken from you after your birth. She may have written it down, but may not. It will be somewhere on your records at your doctors surgery. I'm AB Rh-ve and yes, it's rare but it's also very lucky because it makes me (and your mum) a 'universal receiver', which means, if we ever need a transfusion, we can take blood from pretty much anyone. There are blood groups that are less rare but far worse off because they may be unable to receive blood from most donors.

When it might be useful for you to know and have a record of your blood group is if and when you ever travel abroad in the future without your family. Especially if you're going to do a sporty activity abroad. Both my kids scuba dive and go hiking. When they go abroad to do it, they do have a record of their blood group with them. They've never needed it but it's with them just in case. One easy way of recording it, is to get your name, blood group (and maybe postcode, maybe parent's phone number) engraved onto a large dog tag (or similar) and tie it to something like your bath bag. If you have any serious allergies eg penicillin, that could also be put on the tag.

You could ask your mum if you could ask at your doctors reception for them to look up your blood group from your records and write it down for you. If they can find it, they will happily give it to you as it's not a secret.


Hello Emily - Firstly, I think I read that no child has ever been diagnosed with PBC so please stop worrying right now.

I agree with the others that you need to talk to mum or someone in your family, and let them know that you are stressing about this so that you can get some support and reassurance.

I understand what it feels like to fear you will get the same problems as your parents. I have spent all my life worrying that I would get arthritis because my mother had it but I am quite old now and it didn`t happen. Did you know that most of what we worry about doesn`t happen?

So please confide your fears to mum or dad or an auntie whoever you feel most comfortable telling and let us know how you get on.

A big hug from Diane x


Well first of all try not too panic.my daughter was in her teens when she first figured out that she may get pbc.at that time there were less genetic tests.just having the antibody does not mean you will definately get pbc early or any symptoms.

My daughter has never got a blood tests as i dont yhink she wanted to know .she is now 23 shes a qualified physiotherapist and lives life to the full.eats well exercizes.she s been on some amazing hols...thailand,ireland spain,turkey dtc etc she goes to concerts parties weekends with fruends treats me very well and her family.

The thing is with pbc is that it seems to be affected by external and internal things like viruses or pregnancy so it is impossible to know what pathbit will take.knowing actually might lead to a whole load of problems emotional physucal and social.as someelse has said it would be better not to know before you have a mortgage ,insurance,andlife cover.

I think my advuce to you would be wait for now...eat well look after yourself and enjoy your young life.there are too many unforseen consequences if yoi find out now.

The only other person at my surgery with pbc was 70before she had any symptoms.as i say this disease is so individual.

I would try and talk to your mum and get her to read yhe posts on her.i was told that the contraceptive pill can affect the liver so if you are already active in that department you probably maybe need consider contraception carefully.agaon talk to yoir mum if yoi can.

I wish you all the best..remember you are still very young and should not have to take on all this grown up stuff just yet.x

Dont let something that might never happen ruin uour life before its hardly started.x


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