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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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    Quote Originally Posted by gilders View Post
    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 the above CAUSED WG, but may have initiated my initial "attack"
    I agree with Gliders on all the above because I to have been there, done that! I spent years on railroad maintenance crews. Lots of junk leaking rom rail cars. Who knows what else while cleaning up derailment. Fellow workers have died, mostly from cancers of the throat, pancreas, and lungs. Very few from heart attack or stroke but can site 2 cases of heart attack but both were older and not what you would call old timers. I, myself had stage 4 colon cancer and a co worker had same cancer strain that cost him his life and when I made the guys name available to my oncologist, he thought it was ironic because Tim and I had the same strain of cancer but his took his life and I survived stage 4. He got the same treatment as I did. It could have been the radical surgery I had for the cancer. I thinks major surgery can cause the wegs, I had that and was told to expect problems because I wasn't expected to survive! But like Glider, I was a drinker, smoker, stayed out or up all night, ate what I wanted, all with reckless abandon.
    However, I am 58 yrs old and never met my grandmother,(dads mom)but she died in 1953 from renal failure. She got sick I was told and with in months she died. No mention of diabetes and a lot less info then as opposed to today. She well could have had wegs when to comes to the kidney and not matter what the Dr's tried, she failed after several months from the failure. My dr says no link is likely but no evidence point to hereditary. That's no to say that there couldn't be a gene that she carried and I got it. So yes, I can look at a lot of possibilities for the cause of my wegs. Also a tidbit, My oncologist asked me about my heritage just in conversation when talking about my wegs and how they all missed the signs. I told him that my dads Grandparents (my great g-parents) came from France. He thought that was interesting because the Tim, my fallen co worker was of European decent in so that studies show that auto-immune diseases such as ours and arthritis etc. tend to affect people of European decent where as neurological diseases affected mainly other cultures such as Nordic ancestry. I have a lot of signs that meet what science thinks is the cause but they cant pinpoint any one particular trait

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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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    duplicate post ...............



    Last edited by Bing505z; 10-09-2014 at 07:05 AM. Reason: duplicate

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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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