Autoimmune

Is anyone on here autoimmune. I'm 18 years old and have been in hospital two/three weeks.. after a struggle of not knowing what my condition was after two weeks my blood results came back positive autoimmune hepatitis. Still waiting for liver biopsy results. My bilirubin is now at 413 after yesterday day being at 420, I've just started steroids a day ago. So I hope I see improvement. I'm due to go on holiday on Wednesday, and just hope I can get! Does autoimmune affect your day to day life much and will I stop me doing certain things? Thanks , lee

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  • Hi Lee, if they can get your AIH under control with meds then many folks manage to live pretty normal lives, some folks have more symptoms than others and for some fatigue is the biggest factor but it is all about getting to know your own body and resting when you need etc. Sometimes the meds cause more issues than the illness but you'll learn to live with those as time goes on. Looking after your liver is a big thing going forward so at 18 when others might be heading for the booze you will need to find sensible alternatives as you won't want to stress your liver any more than needed.

    If you do Facebook at all there is a fantastic AIH support page on there with over a 1000 members, most are AIH patients and some like me are loved ones of family members with the condition. They are supported by many of the UK top boffins in the field of AIH and AIH research and treatment and have regular get togethers where some of these top docs come to speak and answer questions etc.

    You'll find lots of folks on there who've been where you are now, including several members who like you have been diagnosed at a young age and lived through their young adulthood with the condition.

    Page is a closed page so only you and fellow members can see what you post.

    You'll find valuable support there as you learn to live with your diagnosis and page is at:- facebook.com/groups/AIHorgU...

    All the best to you,

    Katie

  • Thanks Katie - that is invaluable advice

    Leeward - in addition AIH support also have an excellent website - autoimmunehepatitis.org.uk/

    best wishes

    Andrew

  • Hi Leeward, I am autoimmune. The first 12 months can be difficult as you re-adjust to what your "new" body can do compared to the old you!! I had a pretty bad initial hit when first diagnosed, but did eventually manage to get back to using the gym 3 times a week (Metafit, Zumba and circuits) so your body can recover, but don't be in a hurry!

    Any questions- just ask, although as Katie has pointed out, the Facebook page has younger diagnosed members and their experience may be different to mine being diagnosed a lot older then you. Best of luck :)

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