Advice for a "young" PBC sufferer?

Hi All,

I have recently been diagnosed with PBC and all the doctors and consultants kept saying that I'm very "young" and I don't fit the "norm" as most suffers are those who have given birth (I haven't) and over 50 (which I'm not..I'm 27). Is this true? Am I alone? I somehow doubt this but I can't help feeling alone at the moment suffering with this condition.

I am trying to ensure that my life goes on but to be honest I don't really know what I could change to assist in lengthening my life and quality of life. Any advice would be great.

Thanks in advance!

11 Replies

  • Hi.

    You are not alone. I was diagnosed 12 years ago at that moment 25 years old. I was in coma for 3 months after biopsy. After that I recovery thank God. I don't have any symptoms I take urso every day. My problem now is that I got early menopause and I can't have a  baby. My husband is devastate we don't know what to do. If you want to have a family don't wait. PBC is a terrible disease. 

    God bless you. 


  • Thank you for your reply. I want to have children more than anything, I used to want to have four but now I think it would be wrong to have that many if I can't keep up with them and my condition gets worse.

    I wish you all the best and sorry to hear that you are suffering. Just remember that there are many children who have been neglected looking for adoption, you sound like someone who has alot of love to give so don't rule out all your options.

    I wish you all the best

  • wow did something happen after the biopsy?? what caused the coma...I'm so glad you woke up from that!: )

    I'm so very sorry that you aren't able to have a baby :( To say there are other ways, seems pointless right now - I know you must be grieving and I'm so sorry :(

  • Hi Becca. 

    After the biopsy I got internal bleeding my liver couldn't take it and all my body shut down. Thanks God now I'm fine without any symptoms,just the issue that I mentioned before, but I'm sure God has somethingelse for me. I have to convince my husband to adopt. He is in pain right now, trying to accept the situation,but I'm sure we'll do something about it. I see my doctor every six months,eat healthy and exercise every day. I have fibroscan next month. I hope everything is going well with you. 

    Thank you. 


  • glad that you're better now (in terms of the biopsy stuff)! :)

    Things are okay with me - getting on with this thing called living :) trying to keep my focus there. I've been clinically depressed before and when I lost my first baby (miscarriage) I almost went down that same road again - so I have to keep positive and focused on good things ...same for now - I have to keep moving forward.

    I can only imagine your husband is grieving this too :( your answers will be revealed in time :) good luck!! :)

  • Hi Andz

    Just a quick thought, have you joined the PBC Foundation.  Link above if not.  All information in their members section (free to join) is very useful.

    Also LiverNorth have a DVD which is very informative.

    If you do not live in the UK there are some other connections which may be of use to you via face book such as PBCers.Org.  Canada has its own organisation

    Craig Cameron runs Living With Liver Disease on face book which covers a whole range of topics which are Liver related and is a good source of information.

    All these various sites have something to contribute but I think the best thing is to know your body, work out what suits you, eat a clean healthy diet and have a good exercise regime which is enough to keep you feeling good without exhausting yourself.

    One of the best things I read or was told I cannot remember now is that PBC is not a death sentence and we are more likely to die with it than of it. 

    There are a great bunch of people on here with a good deal of knowledge and I know that I have been very grateful for the internet for giving us the opportunity to have such a means of communication.

    best wishes

  • From what I've read it usually affects women in their 40s 50s and 60s (I just turned 41 a month ago). But regardless, at least you have some answers now, and the diagnosis so you can move forward armed with knowledge and the right medication. Sorry you are dealing with PBC.... :(

  • Can agree with previous postings from butterflyEi and becca75. I was diagnosed in 2008 I'm 44 now but been ill since I was 22 and they could never figure it out. Because of that I have cirrhosis and will need a transplant in the future hopefully way in the future as the nature if this illness is the unpredictability of it. I always thought I would have children but I've been so ill and tired that I'm sure that's why I've never been pregnant. I've had periods of deep despair when friends tell you they're pregnant but it has got better and now having early menopause so no option but to except. 

    Best wishes

  • I was 36 when i was diagnosed..i was very poorly with my 4th  pregnancy and had glandular fever.ive never got my energy back and its been so hard trying to cope with 4 children and pbc.

    If id know more about pbc  i definately would not have chosen to be that ill with a large family to bring up.they have all survived to tell.the tale littlest is  17 and at now getting close to asessment point for transplant which is gping to b hard for all of them.

    I think you are right to think carefully about family as it does seem to knock these autoimmune conditions on.

    I think a liver unit  woild be able to give you some advice.

    On a different note i did breast feed my son even though i was on urso.he was delivered 5weeks early as my liver was struggling 

    and he had stopped growimg.

    Sorry to bring bad news but hormones can do very wierd things to livers.good luck.cazer.

  • Hi andz was also going yo say what about adoption...i know thats a hard thing to say when ive had my own healthy children but it has been so.... hard especially on my husband.all the ordinary things that you assume you can do with your children when they are young...walks swimming going oit for days..weve done our best but ive had to use a wheelchair or mobility scooter least it was somewhere useful to carry the sandwiches but not a good lifestyle choice.

    My 4are all pretty normal adults now but theyve had a lot and will have a lot to deal with ongoing.

    Its not an easy one.i was thrown into  being ill so the choice was taken away ...i dont evy you the decision!!! Cazer

  • I'm 30 just diagnosed and struggling with it

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