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Thread: How many of you think you know what caused this terrible disease to you ?

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    Default How many of you think you know what caused this terrible disease to you ?

    Just curious ... I often wonder what led me to become a carrier of Weg's . For me , I have a strong feeling it was some kind of mold ..I lived in a duplex for 5 years and every time it would rain it would flood a bit in the unfinished basement where my laundry room was. Idk , I realize they haven't discovered the cause of it yet but I wonder how many others had close encounter's with mold...

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    I've wondered a lot about this too...before dx I was always extremely healthy and the rest of my family is healthy as well. I don't have any solid idea of what caused WG, but I suspect a few factors based on what was going on in my life a few months before I got sick:

    -work-related stress & anxiety
    -dust/mildew
    -pushing my body too hard (too much exercise, not enough sleep)
    -extreme cold/winter weather for months
    -tdap vaccine (I got this a few weeks before WGs symptoms started. Although I totally believe in and support vaccines, the timing is a bit eerie)

    Honestly, though, I don't have a good idea about why this happened. I'm curious to hear your theories!

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    I'm rather certain it's genetic and although something might trigger your first flare, even if you avoided that first trigger sometime later in life if you have WG it will flare up.
    So there probably is many similar themes as to what people were experiencing when first diagnosed, so I'll add my "lifestyle" when Wegener's first "attacked" me.
    -Hard, physical outdoor job
    -Cold weather (which I had to work in)
    -Fairly heavy drinker
    -Fairly unhealthy diet
    -Late nights and some early starts
    -Work environment led to contact with hundreds of people each day

    I don't believe any of te above CAUSED WG, but may have initiated my initial "attack"
    Diagnosed April 1995

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    Bing505z is offline Banned for being a douchebag
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    Quote Originally Posted by Carmen11 View Post
    Just curious ... I often wonder what led me to become a carrier of Weg's . For me , I have a strong feeling it was some kind of mold ..I lived in a duplex for 5 years and every time it would rain it would flood a bit in the unfinished basement where my laundry room was. Idk , I realize they haven't discovered the cause of it yet but I wonder how many others had close encounter's with mold...

    Flu Shot ..................

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    I'm rather certain it's genetic and although something might trigger your first flare, even if you avoided that first trigger sometime later in life if you have WG it will flare up.
    I think most current research agrees with you Anne. I don't think I've seen any research suggesting a flu shot causes GPA. Siminovitch (sp?) At Mt Siani recently discovered the culprit genes. I'm in the UK and only have my tablet, but if you search Baird and Siminovitch, you'll probably find the article.

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    This is a link to the article that I think vdub mentions:
    Association of Granulomatosis With Polyangiitis (Wegener’s) with HLA–DPB1*04 and SEMA6A Gene Variants
    Association of Granulomatosis With Polyangiitis (Wegener's) With HLA?DPB1*04 and SEMA6A Gene Variants: Evidence From Genome-Wide Analysis - Xie - 2013 - Arthritis & Rheumatism - Wiley Online Library
    I'd be interested to see if my parents and siblings also have the genes that are strongly associated with GPA.
    "Drink your tea slowly and reverently, as if it is the axis on which the whole earth revolves—slowly, evenly, without rushing toward the future. Live the actual moment. Only this actual moment is life." -Thich Nhat Hanh

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    Bing505z is offline Banned for being a douchebag
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    duplicate post ...............



    Last edited by Bing505z; 10-09-2014 at 06:05 AM. Reason: duplicate

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    Bing505z is offline Banned for being a douchebag
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    I've read the research before, and the research lists genes as "significant contributors" .... not as the "culprit". Now, when I use my noodle, I know its autoimmune, which from that I know there will not be a cure, but yea, genes are involved, and so is some mutation of those genes. So what caused the mutation??? Genes ... well good lord what disease does not involve genes .... Tell me what caused the mutation ....


    What does vasculitis have to do with vaccines?

    If you do a simple Google search for ‘vasculitis and vaccines,’ you will see over 500,000 results. Consider the following quotes from a few of the scientific articles referenced:

    “…anecdotal cases continue to be reported of autoimmune phenomena following influenza vaccination, including SLE, RA, pericarditis and various forms of vasculitis.”[11]

    Link: http://sanevax.org/a-parents-primer-vasculitis-and-vaccines/

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    Genes ... well good lord what disease does not involve genes ....
    I would guess most diseases are bacterial, viral, or caused by some external factor like asbestos, coal dust, agent orange, fatty foods, etc. I don't know what percentage would be caused by genetics or some predisposition, but certainly not all -- probably not even a large percentage.

    I seriously doubt a vaccine would be the sole cause of getting GPA. It might have been a factor as an unfortunate trigger as Anne suggested, but I doubt it was the sole cause.

    My son is a juvenile diabetic. Type I diabetes is generally regarded as a genetic disease, but in almost all cases, onset is triggered by a viral disease. I think it was bronchitis, but it was a long time ago.

    However, this discussion will likely go no where -- some people are convinced vaccines are bad and others think they are important to our health. I doubt anyone's opinion will be changed -- that just seems to be the nature of this topic. It comes up every year at flu shot time. :-)

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    I have some history of autoimmune diseases in my family (siblings of my grandparents) so if genetics isn't a direct cause, I imagine my genes at least left me predisposed to Wegeners. My first symptom showed up when I went on a ski trip with my high school ski club to Killington, Vermont. I am a skiier but Vermont was especially cold for me and I was out on the slopes for most of the day. I also didn't get a lot of sleep on that trip because it was basically a giant sleepover for me and my friends. I thought I just picked up a cold from the trip but I lost my voice and it never really came back after that. I think of this as my trigger but I don't know if there's science to back that up.

    I also took violin lessons for about two years in a room, which I would later find out had asbestos in the insulation. For what it's worth, I've asked my doctor (Peter Merkel) about this and he's a leading researcher of vasculitis in the US. He told me they're not 100% sure but most researchers agree it's probably a combination of things: a genetic predisposition plus environmental factors and/or exposure to viruses or bacteria. As a kid, I had a history of ear infections and I always had post nasal drip. I had vaccines before I was diagnosed and since I've been diagnosed and they never seemed to really affect me much. Given how strange the disease is in general, I wouldn't be surprised if there are a variety of ways to trigger it.
    Diagnosed October 2012

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