Any one out there with AIH?

Any one out there with AIH?

Hi out there.....after nearly 3 years of illness have been diagnosed with Chronic Active Auto Immune Hepatitis......checked out all the medical stuff, even spending a day at Manchester university medical library......depressing results........52% of me wants to lie down and give up, 48% wants to be well and around for many years to come........ I've decided to focus on the 4 % , work with that and shift the balance........hoping to find support, encouragement and a way out of the Forrest of Despair.

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  • hi CastorOyl

    I'm sure you've already found it but I cannot recommend the AIH support group enough - Ann and her team are fabulous and very supportive autoimmunehepatitis.org.uk

    there is also the info on our website britishlivertrust.org.uk/wp...

    I'm also sure that there are many on here that will give you support too - I'm guessing by signing up here you've already increased the 48% to well over 50 ....

    best wishes and good luck

    Andrew

  • Hello CastorOyl, I had AIH in my late teens / early twenties, unknowingly for at least five years. I felt very low and tired for much of this of time, but I didn't have any obvious symptoms of liver disease until very late on and needed a liver transplant. Thankfully, I got a liver transplant in the late 1980s and have been free of AIH since then. Best wishes, Artyjoan.

  • Hello CastorOyl, I have AIH also- had it for 8 years now. If you have any questions, don't hesitate to ask. We may be able to put your mind at rest and improve your outlook on this. I am a member of the Facebook page, mentioned by admin. I don't really use the Facebook site, but I have found the meetings very helpful and informative. Anyway, welcome to our group and I hope that we can be of some support to you and give you words to improve those %'s. :)

  • Yes .... 1,120 of us on the AIH facebook group facebook.com/groups/AIHorgUK/ If you live around Manchester are you being diagnosed/treated by the hepatology team at Manchester Royal Infirmary. There are half a dozen of so of us treated at the MRI within the AIH facebook group and we sometimes have social get togethers in Manchester.

  • Hi there - many of us with AIH do very well living in a normal life apart from long term medication and hospital appointments. Others struggle a bit most noticeably with the side effects of the medication. And a few unfortunately go on to require a transplant. Do join our Facebook group to share ideas and experiences with others.

    I am just about to post details of our meeting in London in June - and am trying to fix one up in Birmingham in the autumn.

    Ann

    AIH Support

    PS Andrew - thank you for your kind words!

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