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. :)

  • Hi MC, thank you for your response, some how it helps to know others have this , not that I would wish it on anyone. I find myself on a rollercoaster most of the time.....thinking it might have something to do with IBS ....hav eyou been diagnosed with that ? Xxxx

  • Never had that as far as I am aware or been diagnosed with it.

  • 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 Billy, yes I'm about an hour out of Manchester. Though sometimes it might as well be Singapore, the exhaustion mentally and physically.....might be able to get to the next meet up.....would be nice to meet people who don't tell me to pull myself together 🙃

  • If you join the AIH Manchester facebook group you will be kept informed of any future meetups. Alternatively, if you are already on FB, why not join the main AIH support group at facebook.com/groups/AIHorgUK/

  • 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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