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Thread: Another bit of history

  1. #1
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    Default Another bit of history

    Halloo,

    I was diagnosed when I was just about 9 in 1977. I don't remember a huge amount about it but was in hospital in London for a few months and everyone was a bit surprised that I got through it. I was affected in my sinuses and nose and kidneys. I've no idea what drugs I was given other than a lot of pred (60mg for months, and I was pretty tiny to start with). I had various flares and hospitalisations throughout my childhood and teenage years and have been taking pred ever since. I've never come off the pred. I had a major episode in my late teens and early twenties affecting my eyes, sinuses, ears and lungs, although my kidneys managed to keep going. I spent my twenties mainly on pred and Imuran and had a sort of 'lightening strike' 10 years ago and lost my kidneys very quickly. Dialysis for 18 months and a transplant in 2000 and since then I've been pretty good. Disease has been active but controlled for the last couple of years (I have some mild symptoms but my bloods are clear) and am currrently on a teeny bit of pred with cyclosporin and Cellcept.

    Life is pretty good and I work full time in a job I adore, having landed my first 'proper' full time job of my life working for a disability rights organisation after teaching part time for years. I hated teaching but, you know, it was a trade, which my parents persuaded me to qualify in because I can't rely on staying well for very long.

    So, yes, it's not exactly a bed of roses but I reckon I've been very lucky for a very long time. It's lovely to have contact with other WG folk. It was a long long time before I had any contact at all, and I'm particularly interested in sharing experiences with others who were diagnosed very young or have gone through long term treatment. I'm beginning to fall apart a little bit, what with arthritis/cateracts and stuff, but I'm very happy at the moment. It's nice to be here.

    Sarah

  2. #2
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    Welcome Sarah, it's nice to have you here!

    I read that you had a kidney transplant. That's a big thing to go through. Well done for keeping on ticking

    I assume from your post you're in the UK. What city are you in? I've been over to the UK a few times but it has been 15 years since the last visit. Way too long

    Thanks for signing up and for posting your history.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  3. #3
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    Thanks for the welcome, Andrew. I live on the south coast of England and attend hospitals in Portsmouth, London and Cambridge. It's been a long haul but worth the effort.

  4. #4
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    Hi Sarah - I also live on the South Coast - Southampton

    My consultant is a Nephrologist (only my kidneys were affected) who is based at Queen Alexandra in Portsmouth, but he also holds clinics in Southampton.

    Sounds like you've been through a hell of a lot, but still enjoying life - that's pretty inspirational. I was only diagnosed last year and think I was probably quite lucky that I only had kidney involvement.

  5. #5
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    Hi Witho,

    Sounds like we might share a consultant . I had my transplant there (or rather, St Mary's before the clinic moved) in 2000. I think it's a brilliant unit and it's noticeable that the nursing staff stay there for years and years.

    I have a very prickly relationship with the clinical director who has, in the past, made it clear that he thinks I imagine my symptoms (sigh...that old chestnut) and I think they might be a bit renal-centric. Fortunately for me, the doctors at Addenbrookes' Vasculitis Clinic didn't need any persuading when they saw me last year and recommended the reintroduction of MMF which seems to have made a big difference. At least, I don't feel quite so mad any more and I feel really well, too.

    How's your coming along? Are you in 'remission' yet? Ooops - I'd better go and read your intro!

    Sarah

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