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Type: Posts; User: Kimbangu

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  1. Phew I am just glad to learn that I have a "lupus...

    Phew I am just glad to learn that I have a "lupus - like disease" too! - that has made my day I must say.

    I agree that accurate diagnosis is near -impossible. Let's face it he is one of us- ...
  2. This gentleman is unknown in Europe as far as I...

    This gentleman is unknown in Europe as far as I can make out . But I have got my Google news alerts set up so it flags up anything to do with 'Wegener's granulomatosis".

    This morning I find 2...
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    When I was first diagnosed I was told "it's worse...

    When I was first diagnosed I was told "it's worse than diabetes but not as bad a cancer" which I must say, was not a very diplomatic way of putting my mind at rest.

    We need to remember that none...
  4. I'm quite excited because I have always...

    I'm quite excited because I have always maintained that stress was a big factor in my developing this horrible sneaky affliction in the first place.

    Enbrel seems to be the commercial name for...
  5. Stress triggers disease flares in patients with vasculitis

    Study shows psychological health important to controlling Wegener's granulomatosis

    "Some investigators have hypothesized that stress-related hormones lead to immune dysregulation, but research is...
  6. I signed up for their newsletters and I'm sure...

    I signed up for their newsletters and I'm sure they will let us know via the newsletter. They are really "on the ball" . I do like the way this particular organisation are using the whole umbrella...
  7. Yeah that did occur to me! Divided by a common...

    Yeah that did occur to me! Divided by a common language, I think they call it..... :biggrin1: Anyway, this forum does have a percentage of UK users, and I'm sure we are all comfortable with that...
  8. Are you a UK vasculitis patient using the NHS....? - interesting webcast

    Hi I may have mentioned the Lauren Currie Twilight foundation before , I am not connected with them in any way... But they are doing some good work here in the UK promoting general awareness of...
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    When I was diagnosed the Rheumatologist told me...

    When I was diagnosed the Rheumatologist told me that ( from what he had seen) most new diagnoses were in the 4th quarter of the year, and predominately from people who lived in agricultural areas. ...
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    Sorry, what is GPA...? I googled it and found Gay...

    Sorry, what is GPA...? I googled it and found Gay Police Association, Grade point Average, Game Publishers Asscociation but I'm guessing it's none of those. :unsure:
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    Anyone from British Columbia...?

    this can only be good news.....


    ROCHE | Roche Canada supports University of British Columbia autoimmune research Fellowship
  12. Thread: I am an idiot

    by Kimbangu
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    Thanks! What surprised me- what I still find...

    Thanks! What surprised me- what I still find really scary- is the denial part of it all. I was very complacent, to just blame the alcohol.

    Denial is a very dangerous thing for us, we do need to...
  13. Thread: I am an idiot

    by Kimbangu
    Replies
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    2,571

    I am an idiot

    I am an idiot. But I have just learned a few lessons the hard way and I’d like to share them with you all, (mainly because I don’t often get anything worthwhile to contribute) – but also because I...
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    Excellent point, there are probably so many who...

    Excellent point, there are probably so many who die without ever having been correctly diagnosed in the first place. But I would guess respiratory infections would be the main one.
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    In the case of people who aren't diagnosed until...

    In the case of people who aren't diagnosed until it is too late, it's certainly likely that "Wegener's Granulomatosis" would be recorded as the cause of death. But surely for those in partial...
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    It's fascinating that in the first few seconds of...

    It's fascinating that in the first few seconds of that video she says "doctors couldn't help me?". Then later she says the main thing that saved her was medication. I wish she had gone into more...
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    Thanks for this absolutely fascinating post, it...

    Thanks for this absolutely fascinating post, it is also quite a cautionary tale. I did wonder how Ms. Shankers condition had progressed. I saw an online review of her book which ( wrongly ) stated...
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    I bought that book. But I wish I had paid more...

    I bought that book. But I wish I had paid more attention to the fact that Madonna is mentioned in the subtitle, ( "How meditation, medication and madonna saved my life") because there is an awful,...
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    It will also be interesting to see if the...

    It will also be interesting to see if the European Medical establishment follow suit with this re- naming business. For instance the French ( and some Canadians too, I guess) already have their...
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    Diagnosed in Nov 2009 I am in drug maintained...

    Diagnosed in Nov 2009 I am in drug maintained remission since may 2010. I'm on 5mg pred, 100 mg Imuran. I have partial deafness, Tinnitus , and lost a bit of feeling in my right hand which feels...
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    Surely there are countless sources which could...

    Surely there are countless sources which could have caused our autoimmune systems to go into overdrive? - I'm a little surprised that a worker is quoted in this thread as having contracted WG due to...
  22. Thread: Spanidin?

    by Kimbangu
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    hmmmm..... profit margins?

    hmmmm..... profit margins?
  23. Thread: Spanidin?

    by Kimbangu
    Replies
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    1,856

    Spanidin?

    Hi, I have got totally out of touch with this forum but presumably there are still a few UK users on here so I thought I'd post this link to an interesting article.

    I did try a search of this...
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    I think we've all got this in front of us mate. ...

    I think we've all got this in front of us mate. There seems to be an emotional roller coaster. I was diagnosed at the same time as you and I have been thinking about your post a lot today. It's...
  25. Thread: Chatroom?

    by Kimbangu
    Replies
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    Instead of a chatroom, why not just keep this...

    Instead of a chatroom, why not just keep this thread going? - Call it "the chatroom thread" and then the half dozen most frequent contributors could use it as a chatroom. You could pin it so it's...
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