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

[Bing505z]

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

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/

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/

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/


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]

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]

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]

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]

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]

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]

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]

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-...-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_f...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 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 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

... 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]

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]

I posted before going to see page two.

Yikes. Vaccines, sure do inspire heated conversations.