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Hi im 15 and live in the uk

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Guest
Guest

Hi im Daisy and im 15 years old. I was told i had autoimmune hepatitis c about a year ago as well as having schlerosing cholangitis :cry:

It started by me being really tired and losing at least a stone in weight. My mum took me to the dctors and had so many blood tests done but everything came back negative. At least two months later they told me my lfts weren't normal. I then had a liver biopsy, ultra scan and an MRI (in october and i only just got the results back two weeks ago - bloody insane)

They suggested things that i had never heard of before and i was worried that i had some incurable disease. I was then later told that had hep c and schlerosing cholangitis and would have to take steroids (40g) a day and the medicine for the rest of my life. I feel better knowing what is wrong with me and hopefully it won't get in the way of me doing stuff later on in life. :wink:

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3 Replies

  • Guest
    Guest

    Posted

    Hi Daisy,

    I'm 31 and was diagnosed 10 and 1/2 years ago. I just recently found a website you might like: autoimmunehepatitis.co.uk

    I'm amazed it took so long for them to figure it out. I had a similar experience but that was 10 years ago when AIH hadn't even been coined yet.

    Anyhow, as long as I am on meds, everything is okay. Hopefully you'll have a similar experience.

    Good Luck!

  • Guest
    Guest

    Posted

    Hello,

    My daughter Amy is 13 years old and was diagnosed with AH Type 1 over 3 years ago and she has recently been diagnosed with autoimmune Gastritis.

    Amy copes very well and is now on 2.5mg prednisolene and 125mg Azathiorprine each day which she takes at breakfast.

    This is such a strange disease because we are told it's genetic but I recall Amy having a strange virus at the age of 4 or 5 that caused very strange red marks on her body, this virus returned age 8. Until Amy had jaundice and complained of joint aches, headaches, and 'voices in her head' she was a very normal child who enjoyed good health. The only indication something was wrong was her lack of concentration at school and confusion, she appeared to be going backward rather than forward.

    Once Amy was diagnosed (Biopsy) and put on high dose steroid medication she suddenly became able to understand academic subjects and even her handwriting changed. The voices in her head stopped, the joint aches ceased and the stomach aches became milder and milder.......

    Thank goodness we live in an age where AH can be controlled, I feel very positive about Amy's future now.

    Amy has recently been involved in raising funds and awareness for 'Big Yellow Friday', please go to the Childrens' Liver Disease Foundation to find out more. Vital funds are needed for more research into childhood liver disease and we can all do our bit.

    Wishing you all the best for a long and happy life. :D

  • alexandra29
    alexandra29

    Posted

    hey daisy, i had A/H as well! i was diagnosed when i was 10 and i am now 18, so scary to think about how often people die due to doctors not catching it in time, however we are a lucky few! sometimes its sad and scary and i have had to see a psychologist due to depression due to being diagnosed at such a young age. i also suffer from 2 other extremely rare diseases, its nice to be able to talk about this stuff with you guys!

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