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

[daystarr8]

I'm certain it's genetic or from pesticides. My mom noticed when she was pregnant with me. I was her second child and she said for days I didn't move inside of her. She would rush to the dr and they would listen to her belly and hear my heart beat and tell her she was over reacting. This continued the entire pregnancy. When I was born one side of my face was flat the other was perfectly round. Doctor said I slept during the entire pregnancy and she had been right. I wasn't moving in her womb at all. Then when I was born I never got sick like most babies. Never a sniffle or nothing. My brother did but not me. Then at seven things started to change. Started running low grade fevers that came n went. Then loss of appetite. Then nose bleeds. And then. By 9 I was so sick I was dying 😞 I slept around the clock. This was 1979 so there was only cytoxin and prednisone but thank God there was.

[NikkiNicole]

I have a rather interesting theory to how I came to have mine and again, I am not an expert and this is by no means what actually happened because, like most doctors, I'll never know.
My father had Alpha 1-antitrypsin deficiency which is initially noticed with a high PR-3 result. It is a genetic condition and he fought a valiant battle that he lost in 2000 after he also was diagnosed with metastatic lung cancer that went to his brain. Anyway ... my first indicators of something being amiss was my high PR-3 but I tested negative for A1AD.
In 2005, I started going to the doctor a lot for chest pain. I literally then tried EVERY over and under the counter heartburn medication to fix what my doc described as "Acid Reflux". In 2007 I was rushed to the ER with what I felt was a massive heart attack. It was gallstones. In June 2007 the gallbladder was removed and the surgeon said it was the most infected diseased gallbladder he had ever seen.
I think my genetic predisposition to rare diseases ... and the two year infection festering in my body ... resulted in what I have now. Not to mention the 80 hour work weeks in what some would call a high stress environment working nights.

I think this was my destiny ... and here I am.

[Tom]

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

[Tom]

Hi there Marta, Long time since Ive been to the site. I posted earlier to this thread but I can say that my cancer, diabetes and yes wegs came between my fall and subsequent broken back and my first ever flu shot and it wasn't long after that it seemed like things started coming undone like the fatigue, cancer, diabetes Wegener's. Diabetes is prevalent on my mothers side however, and 6 of 8 of us kids have been Dx'd and oldest sister died from complications of diabetes in in 2008, as well as my grandmother in 1972. I have made up my mind that I cant do anything about my wegs but take care of myself and move forward, bad lungs and all.

[delorisdoe]

I have a rather interesting theory to how I came to have mine and again, I am not an expert and this is by no means what actually happened because, like most doctors, I'll never know.
My father had Alpha 1-antitrypsin deficiency which is initially noticed with a high PR-3 result. It is a genetic condition and he fought a valiant battle that he lost in 2000 after he also was diagnosed with metastatic lung cancer that went to his brain. Anyway ... my first indicators of something being amiss was my high PR-3 but I tested negative for A1AD.
In 2005, I started going to the doctor a lot for chest pain. I literally then tried EVERY over and under the counter heartburn medication to fix what my doc described as "Acid Reflux". In 2007 I was rushed to the ER with what I felt was a massive heart attack. It was gallstones. In June 2007 the gallbladder was removed and the surgeon said it was the most infected diseased gallbladder he had ever seen.
I think my genetic predisposition to rare diseases ... and the two year infection festering in my body ... resulted in what I have now. Not to mention the 80 hour work weeks in what some would call a high stress environment working nights.

I think this was my destiny ... and here I am.

I have alpha 1 antitrypsin deficiency too

[Rose]

Since I have been a member here (2009) this topic has come up quite a few times. I think what caused WG for me was a year or so of unrelenting stress then being struck with a very virulent form of gastroenteritis. My son caught the bug at nursery and my husband and I were infected. It was a bad virus. My husband and son recovered in a few days but for me it was the beginning of my WG journey. I think there is also a genetic predisposition in play and when these 3 things come together.( 1) Stress 2) infectious agent and 3) a genetic predisposition) you have a recipe for an A1 disease.

Rose

[NikkiNicole]

I have never met another person who had it! Wow! I am so sorry you have to deal with that on top of everything else. My children could have it but the "test" they gave me for it came back negative.

[delorisdoe]

my aunt, uncle, grandpa, cousin, and step brother all have it too. step brother is just a weird coincidence.

[drz]

I think my Wegs probably resulted from the same factors previously noted here: genetic predisposition (bad genes), history of many ear and sinus infections which my Weg expert at Mayo, who is a top GPA researcher, said probably contributed to my getting Wegs, exposure to pollutants at work (asbestos and others from a garbage burner on campus), high level of personal stress from work and marital discord, and was finally precipitated (the straw the broke the camel's back) by an infection caused by a spider or bug bite which resulted in symptoms thought to be Lyme's disease and for which I was treated several times. At my place of work at least two of us in a force of a few hundred got Wegs (we both also had diabetes which might have been a factor too), four or five came down with MS which is another rare autoimmune disease, and numerous causes of cancer, and several other strange diseases.

[sbeach78]

I was working through the winter, caught H1N1, tried to push past it and kept working for three weeks. Crawling through attics and under houses and stressed to the Max. I think it was the stress and illness combination. I had never so much as had a shot since getting out of school, now I am like most in here(human pin cushions).

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