Hi, I'm a newbie

Hi everyone, I've been reading all your recent posts and you are a lovely group of people, giving advice and support when needed. I have just been diagnosed with autoimune hepatitis and feel quite devastated, although I'm beginning to come to terms with it. My specialist is very optimistic and I will be starting treatment end of the month. I know its a rare disease so I don't suppose there will be anyone else here with aih but I would nevertheless like to be part of your community.

4 Replies

oldestnewest
  • Hi marianne. I have AIH. If you are on facebook there is a great network there of knowledgeable people facebook.com/groups/AIHorgUK/

    If you are not on facebook the same group run a website for AIH autoimmunehepatitis.org.uk/

    They are right up to date with whats going on in the way of treatment research, and there is always someone on the FB page, day or night, as there are members in the USA as well as UK.

  • Hi Marianne, welcome to the site, actually quite a lot of folks on here with AIH, my hubby has chronic cirrhosis due to AIH - he sadly didn't find out he was poorly until the serious damage had been done.

    As Bolly says great AIH facebook group who also have their own support website and forum.

    Katie :) x

  • Hey, I also have AIH- diagnosed 16 years ago when I was 13. You will find that there are quite a few people around with AIH and everyone responds to treatment and the condition differently. It can definitely be managed but needs to be well monitored.

    We're all here to help and there are lots of lovely people here and on the facebook group!

    All the best :)

  • Thank you so much for your warm welcome, information and advice.

    I am on the autoimunehep.board and I received good advice from Jenny and I will check out the one in fb as well. Mine was discovered when I had gallbladder surgery. The surgeon took a liver biopsy and the result was aih.

    This is such a friendly and supportive site I'm really glad to have found it and I'll be posting again soon with some questions.

    Marianne xx

You may also like...