Not yet 100% diagnosed with pbc ,23 years old

Hello everyone my name is yaneira and i am new to this i never thought i would be worrying about being sick with something like this atleast not this young i am 23 years old with 2 boys 4 years and 7 months i have a positive ama results so from reading and research ive done i most likely do have pbc. Im scared i know most women get diagnosed at an older age! I found this out accidently during a life insurance health exam (liver enzymes were elevated) my GI wants to wait on liver biopsy but wants me to start on URSO, is it possible to have a normal life expectancy with pbc? Do you guys know of anyone diagnosed this young who lived a long time? I would really appreciate your feedback and support!😔

12 Replies

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  • Hi Yanera. My Hepatologist has helped me to accept this diagnosis of PBC and to understand that most of us will live long and healthy lives because of early detection and treatment. I choose to focus on this information and live my life. initially when I was diagnosed just last year I was both shocked and scared because of what I read on the net... then I discovered this site , met my Hepatologist and I try to educate myself from sources such as this...

    we are so fortunate to be living in a time where we have access to early intervention.

    Hang in there. You are so young and have small children and that makes it harder but rest assured that you will have treatment and education that wasn't available just 20 years ago.

    Stay in touch with this site and PBC Foundation.. Best Wishes to you...

  • Thank you i will stay in touch and will definetly join the pbc foundation!

  • Hi Yaneira

    I was diagnosed in December 2015. Please know it's not a death sentence. I have a wonderful friend who said she had it from her early twenties and it took 25 years before they even diagnosed it. She's now 65 and doing great. You have caught it early so you can manage it I believe. I follow a very strict diet. The Ph miricle. I believe keeping your body at a good ph level it can help keep inflamation at bay. That's what we are dealing with after all. I like you have two young kids and I am 36 so I know what your going through. Take your urso and lead a healthy and active lifestyle and try not to think about it as stress is not good for your body especially your liver. If you want to send me a message I can give you some good tips that have worked for me so far. Enjoy your kids and family it will all be ok:) take care Emma

  • Im starting to change my diet and i work full time ao it is hard to carry a fitness routine but i try to atleast go on a 30 min jog whenever i can hopefully staying fit can help prolong this disease as much as possible, and ive read in alot of places that it is not a death sentence and im glad to hear your freind is doing great having been diagnosed so young, is she healthy and active? I would love to know what she is doing to help her pbc.

  • Hi Yaneira,

    I want to second much of the comment from the other 2 posters. Huge steps forward in research mean that for the majority of people diagnosed with PBC the condition is manageable and responds well to Urso, and it seems that new steps forward are in the pipeline. I don't (yet) have PBC, as I only test +ve for AMAs (have done for over 23 years) but my liver enzymes have always been fine, and I don't have any symptoms, although I always have annual liver function tests, as I could go on to develop it.

    I suggest you join the PBC foundation - it's free, and loads of online advice. See the link to their site at the top of this page, where you will find email and phone links to talk to their trained advisors, who can give you even more advice and reassurance.

    You concentrate on looking after yourself: advice on diet and exercise from the PBC F will help; but the best other things to do (apart from avoiding alcohol, to give your liver even better health) are to stay happy and stress-free and treat yourself and enjoy your family. Autoimmune conditions strive on stress, so don't give the stress a look in: rest when you need to, but keep doing things you enjoy and living life to the full.

    Take care,

    Gritty

  • Thank you i will join the pbc foundation!

  • Dear Yaneira

    There is currently lots of research going on re PBC and autoimmune conditions generally so by the time you are my age (68), I am sure you will have benefitted from a cure.

    In the meantime, Urso slams the brakes on PBC and did you know it is known as a `glacier` disease because it moves so slowly anyway. So you have plenty of time. Stay calm because stress feeds PBC and autoimmune conditions.

    Focus on the positive honey and enjoy your little ones - their childhood will race by and you will be a grandma before you know it. Keep in touch. Big hugs. Diane

  • Yes i hope that in the next years there is more medicines found to help cure pbc, thats all i ask in life to live long enough to see my grandchildren😊 Thank you

  • That's all I want too!

  • Hi Yaneira

    The diagnosis must have scared you out of your wits as it did for many of us. Don't let it. I was diagnosed in my late 40's but suspect it had been there for a long time before that. I am now 70, active and enjoying life and my grandchildren. Take your meds and enjoy life-you have a lot of living to do yet. Hugs.

  • Thanks so much to all of you i really appreciate your advice, and i 100% agree that the mind works wonders so i just have to be positive and be as much stress free as i can. I will keep you guys posted on my next results, it gives me motivation to know that alot of pbc women have managed to live long healthy lives 🙂 Hope all is well with you girls too!

  • Hello Yacontreras,

    We have read your post and will send you a direct message.

    Best wishes

    PBC Foundation

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