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Carmen11
10-08-2014, 07:49 PM
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...

morningsunshine
10-09-2014, 01:13 AM
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!

gilders
10-09-2014, 03:13 AM
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"

Bing505z
10-09-2014, 05:10 AM
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 ..................

vdub
10-09-2014, 06:02 AM
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.

morningsunshine
10-09-2014, 06:26 AM
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 (http://onlinelibrary.wiley.com/doi/10.1002/art.38036/pdf)
I'd be interested to see if my parents and siblings also have the genes that are strongly associated with GPA.

Bing505z
10-09-2014, 07:00 AM
duplicate post ...............

Bing505z
10-09-2014, 07:01 AM
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] (file:///C:/Users/Norma/Documents/SaneVax/Press%20Releases/Norma/10.12.12-Parents-Guide-Vasculitis-Vaccines.doc#_edn11)

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

vdub
10-09-2014, 07:42 AM
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. :-)

jlove
10-09-2014, 08:58 AM
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.

Bing505z
10-09-2014, 01:52 PM
I believe the thread began with a question asking what people think “CAUSED” theGPA.

I think what we have here, is a failure to communicate. I just don’t spit up dribble and pose them as facts.

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

“Trigger” by definition (verb)
cause (an event or situation) to happen or exist.
"an allergy can be triggered by stress oroverwork"
synonyms: precipitate, prompt, elicit, trigger off, setoff, spark (off), touch off, provoke, stir up, cause, give rise to, launch,lead to, set in motion, occasion, bring about, generate, engender, begin,start, initiate, enkindle
https://translate.google.com/#auto/en/trigger (https://translate.google.com/#auto/en/trigger)

So yea, I guess I agree with you.

Some facts:
We are made up of cells that have 46 chromosomes. These chromosomes are made up “strands” of genetic information called DNA. Genes are sections of DNA.
“Genes are specific lengths of DNA that determine the order of amino acids used to make protein. Some proteins are needed in the functioning of all cells, others are not. In the second case, the gene coding for the needed protein is switched off allowing different structures to exist at the same time.

Alternative forms of the same gene are called alleles.Each person can inherit only one alternate form of a gene. The combined effect of alleles result in the physical differences in appearance among people likethe color of their eyes and hair, the shape of their nose etc.

Dysfunctional gene behavior is commonly termed as a mutation. These mutations are responsible for causing illnesses. Moreover,if the gene mutations exist in the egg or sperm cell, children can inherit thedefective gene from their parents. Diseases can occur due to a defect in a single gene or in a set of genes. According to the degree of gene mutation,diseases are categorized into the following:
Chromosomal diseases: occur when the entire chromosome,or large segments of a chromosome, is missing, duplicated or otherwise altered.Down Syndrome is a prominent example of a chromosomal abnormality.
Single-gene disorders: occur when an alteration occurs ina gene causing one gene to stop working. An example of a single gene disorderis sickle-cell anemia.
Multifactorial disorders: occur as the result ofmutations in multiple genes, frequently coupled with environmental causes. Anexample of a multifactorial disorder is diabetes.
Mitochondrial disorders: are rare disorders caused bymutations in non-chromosomal DNA located within the mitochondria. (Themitochondria are subcellular organelles.) These disorders can be found toaffect any part of the body including the brain and the muscles.

Genes are also known to play a role in the occurrence of infectious diseases like tuberculosis and AIDS as well as some non-communicable diseases like cancer and diabetes. This section includes a brief introductionto the role of genetics in some major diseases that burden the human population globally.”

Link: http://www.who.int/genomics/public/geneticdiseases/en/ (http://www.who.int/genomics/public/geneticdiseases/en/)

Here’s another fun fact:
“A surprising fact about genetics is that there are many syndromes that are termed "genetic," but have not been inherited from a parent. When DNA is passed from one generation to the next, itis copied. Generally, DNA is copied faithfully, however mistakes do occasionally occur. These mistakes are sporadic and can sometimes lead to disease. A defining characteristic of these syndromes is that no family history is present before the affected child is born. If a family has a child with asporadic genetic syndrome, the family's chance to have another affected child is low.”

Link:http://www.livestrong.com/article/119083-diseases-caused-genetic-disorders-but/ (http://www.livestrong.com/article/119083-diseases-caused-genetic-disorders-but/)

Some individuals, who have “confusion” on genetic terms,and associating the word gene 100% with inheritance, should be set straight to fly right now.
Ask any Doctor, and that Doctor will tell you that disease is genetic in one way or another. The above mentioned research, for the second time, refers to the genes as "significant contributors .... Not as the "culprits".

The cause is what caused the mutation of the gene, be it environmental or from what was stuck in your arm. Who is to say a single vaccine could not cause gene mutation. It’s extremely possible, but never mind the word“vaccine”, since I see people are fixated on this word, and believe that a discussion will go nowhere. Opinionated and nonsensical dribble, and I guess I stand corrected by such, and since it is clearly your forum, do as you wish and close the thread if it goes nowhere.

…. And about the Type I Diabetes ….ummmm….nope it’s not a genetic disorder…It’s an autoimmune disease …. And definitely not inherited. There are some genetic factors involved, genetic dispositions if you will, and then something in your environment “triggers”, in other words “causes”, it. Be it inside a womb or outside a womb. However the cause of Type I Diabetes is unknown … link to theWorld Health Organization:
“Type 1 diabetes
Type 1diabetes (previously known as insulin-dependent, juvenile or childhood-onset)is characterized by deficient insulin production and requires dailyadministration of insulin. The cause of type 1 diabetes is not known and it is not preventable with current knowledge.”
http://www.who.int/mediacentre/factsheets/fs312/en/ (http://www.who.int/mediacentre/factsheets/fs312/en/)


I really encourage individuals with GPA, which is worse than cancer (told to me by my Vasculitis Specialists and not just dribble spit out) to please check with your Doctors to do fact checking and please don’t rely 100% on what you read on a forum …. Should add – with any other disease for that matter.

Dirty Don
10-10-2014, 03:23 AM
Good info, logical, well supported, and probably on the right track...but, leave your attitude at the door. Many peeps on here are asking, helping, sharing, and just plain lost, especially at first. Rumors prevail in instances like that...your info is good and at the base of AIs, most likely. But 'scared' elicits many responses that need help, not pedagogical approaches in hopes the patients snap out of their fright...but I hope you feel better. Best to you.

annekat
10-10-2014, 07:19 AM
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. vdub, just wanted to point out that it was gilders who wrote what you responded to, not me... want to give credit where it is due. And the recent evidence on a genetic link is interesting, thanks for sharing that.

annekat
10-10-2014, 07:43 AM
I can think of a couple of things besides whatever genetic predisposition I may have. I make pottery, and have been exposed to silica dust over the years, which has been mentioned by some as a trigger for WG. There have been cases of people working in glass factories or coal mines, or who live near such activity, which have been related here on the forum. I can't give any scientific studies, though there may be some. It seems that exposure to some environmental substance or toxin can be indicated as a trigger.

A couple of weeks before my first big WG symptom, a severe, antibiotic-resistant infection in both ears, I went to a funeral where I inhaled a lot of strong incense, not something I'm used to, and began coughing heavily. I was recovering from a mild cold at the time. It is pure speculation to think that that could have been a trigger.

I've had allergies most of my life and had trouble with recurrent bronchitis as a child and asthma as an adult. Most members of my family have had some issues with sinuses, adenoid and tonsil removals, deviated septums, etc., although no one else has come down with WG. That again is speculation to suggest a possible genetic disposition, and similar to what others have reported. Some have reported more than one case of WG in a family, or multiple cases of various AI diseases.

I know I did not get Wegs from a flu shot because I've never had a flu shot, or any other kind of shot in recent years except for allergy shots I was getting for a time.

NicShaf
10-10-2014, 08:40 AM
In my late teens/ early twenties, I was (like most young women) on a perpetual diet. I ate horrible, processed “low cal” food all the time. I also drank multiple diet cokes per day, I am a firm believer that artificial sweeteners played a large part in my getting sick.

whatthewhat
10-10-2014, 09:17 AM
Symptoms started after H1N1 vaccine. Also we were living in the desert, and in the sand all the time. Totally a genetic predisposition, but if I could go back and change anything it would be those two things.

delorisdoe
10-10-2014, 10:20 AM
Although I seem to be in an incredibly painful wg flare right now, I would say in my 15 years that wg is not worse than the cancers I have seen my friends and loved ones survive or die from. I don't know how or why any doctor would ever make such a claim. I would however like to extend my thanks for the grade 11 biology refresher. Biology was always my favorite course and chromosomes are super fun and interesting!
vdub..I have been away for quite some time as I only seem to come here when I am in a flare-I know, so selfish-but it is good to see you are still as helpful as always. I am so on the fence with my "opinion" of how and why. I hope they one day soon figure it out so one of us can say "told you so". Perhaps in a more respectful manner than some here may chose.

marta
10-10-2014, 10:29 AM
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] (file:///C:/Users/Norma/Documents/SaneVax/Press%20Releases/Norma/10.12.12-Parents-Guide-Vasculitis-Vaccines.doc#_edn11)

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



Thank you Bing!

I feel like I'm being pegged as a conspiracy theorist for believing that the H1N1 vaccine caused my WG (along with my doctors,) so it's nice to see have someone have my back. This is a topic that really touches a nerve with me because those who don't agree with your opinion, tend to get a little aggressive with their words, and assume you just watch cable tv with your tin hat on, forgetting that the only reason you have been looking into this whole topic is because it took your previously healthy, wonderful life and destroyed it to a point where it will never be the same. I've been looking into this, trying to connect the dots for five years now. (I'm not talking about anything on this particular thread)

Here is what it says on page 16 of the H1N1 product information leaflet regarding possible extreme negative side effects.
Very rare: Vasculitis with transient renal involvement.

Yes 'Very Rare' but it is one of the very few diseases actually named as a possible side effect, directly from the pharmaceutical company.

Here's the link to the leaflet in PDF from the Health Canada website. http://www.hc-sc.gc.ca/dhp-mps/alt_formats/pdf/prodpharma/legislation/interimorders-arretesurgence/prodinfo-vaccin-eng.pdf
I had this through the GSK website, but it appears they've removed it (or I can't find it anymore.)

And I'm totally on board with the genetics discussion. Two things they know for sure about Autoimmune Disease is
1. Genetic predisposition and
2. Trigger.

(Questions and Answers | AARDA (http://www.aarda.org/autoimmune-information/questions-and-answers/) if you would like some simple Q/A on Autoimmune Disease. There is some amazing info on this site.

I know I was genetically predisposed because everyone in my immediate family has an Autoimmune Disease. (vdub, it seems to be in your family too, because Type 1Diabetes is actually an Autoimmune Disease, and you have your WG, bet you there's more lurking around your gene pool, as there is around mine.) Here's the list in case you want to count them out. List of AI diseases and disorders | Find The Common Thread Foundation (http://findthecommonthread.com/list-of-ai-diseases-and-disorders/) Once it's in your family, you're at higher risk. Once you have one, you can acquire more - our immune systems are already confused, they just need to mistake another protein, in another part of the body, and voila, you have a new autoimmune disease.

The trigger could be anything. For me it was a vaccine, that had an adjuvant (squalene) used so that it could increase the immune response and allow the health authorities to vaccinate more people with less vaccine. It was a response to the "Chicken Little" reaction of 2009 that made 'flu shot' a household phrase. Being predisposed, and the possibility of Vasculitis being one of the possible autoimmune responses, for me it was a perfect storm for Wegener's and I to have a face to face, for the rest of my life.

I would never in a million years tell someone not to get a vaccine. I've vaccinated my daughter, vaccinated myself when it was necessary, but I really get my hackles up when there is a 'born again' mentality of those on the opposite viewpoint from mine, and when the conversation turns to passive-aggressive name calling. I think vaccines have helped humanity in a huge way. I don't however agree - personally - with getting vaccinated twice a year, every year, because that's what we do now.

Here's a shocking, and emotionally wrenching story about a number of children getting a previously 'old person's' autoimmune disease - Narcolepsy - after receiving that 2009 batch of H1N1 vaccine. This is a nationally respected news agency doing hard investigative reporting and taking a chance that their story will make a difference and they might dodge the 'conspiracy theorist' label. Sleeping Sickness: A W5 investigation into the sudden rise in childhood narcolepsy (http://www.ctvnews.ca/w5/sleeping-sickness-a-w5-investigation-into-the-sudden-rise-in-childhood-narcolepsy-1.1524420)

... and that will be my last comment on vaccines. I wish you all health, happiness, and no stress.... and absolutely no more autoimmune diseases.

Carmen11
10-10-2014, 12:09 PM
Thanks Don , I was thinking to myself that it seemed like this person had a " tude " but am new and just trying to strike up conversations and get to know and understand other point of views and try and get a grip . You are a gentleman ! gracias ! xoxo

marta
10-10-2014, 01:02 PM
I posted before going to see page two.

Yikes. Vaccines, sure do inspire heated conversations.

daystarr8
10-10-2014, 02:47 PM
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
10-10-2014, 06:07 PM
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
10-10-2014, 06:21 PM
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
10-10-2014, 06:51 PM
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
10-11-2014, 04:46 AM
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
10-11-2014, 05:20 AM
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
10-11-2014, 06:14 AM
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
10-11-2014, 07:14 AM
my aunt, uncle, grandpa, cousin, and step brother all have it too. step brother is just a weird coincidence.

drz
10-11-2014, 01:03 PM
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
10-11-2014, 03:27 PM
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).

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

ArlaMo
10-12-2014, 09:07 PM
I think my triggers were mold in our bedroom (we had an ice dam on our chimney and water ran down the walls - the landlord never replaced the carpet or padding) and some pretty intense stress at the time.

tring_vu
10-16-2014, 12:01 PM
Hi all,

This is the best video I have seen describing ANCA parthenogenesis:


http://www.youtube.com/watch?v=A4b_-uUNv7w

The irritation (mold, mildew, infection) may be the initial trigger to a series of genetically predisposed events.

Best,
Tring

chris.wg
10-16-2014, 12:30 PM
I don't know what caused it but a number of mentioned factors mentioned are all possible. When I went to see my rheumy recently I asked about my cousin not sure on what kind of cousin she is 2nd 3rd or what have you but her grandmother was my great aunt. Any rate she is going to see him soon since her GP says she is 95% likely to have lupus and needs a rheumy to confirm. Anyways when discussing it with him I asked if there is a likelihood of genetic predisposition for auto-immune because we had discussed this subject earlier in another thread. And the fact she is related I thought it was worth a check. So he told me they are not sure on the exact roles genes play for auto immune but they do know they play a role. since lupus was what we were discussing or perhaps something he recently read in a rheumatologist periodical, he was able to tell me a number and I will be honest I don't remember the number it was over a month ago now but for some reason both 14 and 21 seem to make sense. Either way what ever the number was those are the number of genetic traits linked to lupus. What I got out of it is back early on in this wall of text. Genes do play a role but exactly how much we are not sure. On a side note the ent at U of M I am now seeing said there also evidence that people with sinus involvement often show signs of staff in the sinus cavity. Lucky I did not. But he says he isn't sure why that is if one is linked to the other or not. Who knows? But it is certainly a lot of information to think about.

vdub
10-16-2014, 06:58 PM
My great uncle died of WG in 1968. AI's are definitely in our family. One brother has RA. Another brother, a 1st cousin, and my Dad have Raynauds.

Miranda
10-17-2014, 11:48 AM
This has been fun to read. I was always pretty healthy growing up and never any bad case of the flu or anything. I was 22 when I was diagnosed and I hadn't had any kind of shot since I was young starting school and all that. My first cousin and my great uncle have lupus which is very similar to our disease. My new doc says there are things being discovered that it could be genetic. the autoimmune part of it. That's all I got. I work at a bank and am around dirty money but that is really the only thing I can even think of that I was around at the time. no mold, no craziness that I can even think of. I get stressed pretty easily and the docs have always said stress is our worst enemy.