poll: diseases

[marta]

OK, you guys are talking about what I've been spending all of my energy spreading awareness for.

The answer to the first question of this thread is a resounding YES!!!! There is a genetic predisposition. They now know that.
The problem is that each disease group behaves as if they're unique and they're trying to find cures for their disease and have their disease specific audiences and many of them don't even know they have an autoimmune disease. This is because the manifestation of the disease happens in different locations of the body and is thus treated by different specialties within medicine which segregates the members of this disease and it's research.

All autoimmune diseases are expressions of an immune system attack on otherwise healthy tissue, system or organ, in our Wegener's case a certain diameter of vasculature within our body. So what science knows about the commonality, aside from disease activity within the body , is that autoimmunity has genetic predisposition, and a trigger. So I for instance know that I had the genetic predisposition because both my mom, my dad, and my only sister and now me, all have autoimmune diseases. I have WG, mom has Fibromyalgia, dad has Lupus, and sis has Psoriatic Arthritis. For me the trigger was the N1H1 vaccine, for others it may have been viral, or exposure to something, or a longtime infection.... that's what we're always trying to find out, but the truth is that we have a bigger question to ask and that's the one that will lead us to seeing a cure in our lifetimes. What's the same thing, the common thread, that runs through all of the autoimmune diseases?

https://www.aarda.org/common_thread.php - This is the article that changed the trajectory I was on from trying to spread the word about Wegener's (which I still do but not to the same extent) to trying to do what I can to unite and spread awareness for all autoimmune disease so that we can start getting some serious money going into some good research on eliminating autoimmune disease, an outcome of which we will surely benefit. Only by working together will we see what we all search for in our dreams.... a cure to Wegener's.

So we're all in this together. Here are some very interesting reads to that end.

https://www.aarda.org/autoimmune_statistics.php Autoimmune disease statistics. There's some shocking stuff in here.
https://www.aarda.org/women_and_autoimmunity.php - Autoimmunity in women. Generally it's more of a woman's disease but in Wegener's I think it's a little more male heavy.
https://www.aarda.org/q_and_a.php Questions and answers on autoimmunity. Much more eloquent than my rantings.

And here are some links to some revolutionary research:
The human microbiome: Me, myself, us | The Economist

and if you're not into reading, here's a radio interview with a Canadian doc doing research in this world. It's such a new model of looking at health and chronic health in particular that I feel it might be a path that might lead to some profound answers.
Audio

This is why I think that if we get together with all of these groups, create a mechanism wherby they/we can work together and look for the common thread. Who knows that information might already be out there and all they need to do is compare notes. Or support out of the box research that you know is not greed motivated.


On Rif's point. You're right Rif, not nearly enough dollars spent on WG, or any of the other rare autoimmune diseases to do anything of major significance anytime in our lifetimes. However as mentioned above, autoimmune diseases affect one in five people. That's 20% of our entire population, and as all of you on here know, it doesn't affect just us, but our entire families, friends, employers, and our quality of life. There are over 140 autoimmune diseases and ours is one of those, but so are some of the more famous ones like MS, Rheumatoid Arthritis, Crohne's, Ciliac, Lupus and on and on, and all of them with all their money haven't gone any further in treatment than ours has. They all treat symptoms and try and stop disease advance by beating the crap out of our immune systems with chemo and other toxic stuff. This does indeed do it's intended job but puts us at an equal danger from the sometimes deadly side effects of the drugs. It's such a fine balance and so tiring to navigate on an ongoing basis. (Side note: In the movie 'Food Matters' there is a stat that blows my mind - 106,000 people die per year from negative side effects of prescription drugs - crazy!)

This isn't right and we can change it by advocating unity. My thinking was that, sad as it is, people wont be moved to action if the affected group is 1 in 40,000, OK even 1 in 10,000 for Phil's sake. They aren't moved into action for 1 in 500. But if 1 in 5 people and their families suffer in secrecy behind closed doors because science hasn't gotten past "take this chemo and steroids and suck it up buttercup". I know not all are on chemo but most have to endure steroids, and there is some equally toxic stuff patients with MS have to take, I've been blown away at how similar people's journeys are across the autoimmune disease board ... it's just not right.

So that's why I did Pajama Day the last two years. Pajama Day Archives | Find The Common Thread I figured it was definitely a uniting force - all of us in our PJ's. We've all had horrible PJ days, some for way too long, and this was a way to pay homage, and also show you're one of the affected. When this starts to grow year by year, governments, legislators, scientists will see a need to find a cure for this disease - autoimmunity.

There, I think I'm done ranting like a lunatic. But I really believe this is what will set us free, and I spend every waking moment thinking about how to get it to the next step. Just like coming off pred, it's happening in baby steps with the odd set-back, but all forward momentum.

Peace.

[pberggren1]

Come on Marta, get it right. It is 1 in 5,000......lol

[Dirty Don]

"No single gene by itself causes an autoimmune disease; instead, a coalescence of several genes in certain individuals, in the aggregate, heightens significantly the overall possibility of developing an autoimmune disease. Some of these genes may be specific for a certain disease, but others predispose to autoimmunity in general. That explains why a single patient MAY (sic) have more than one autoimmune disease or why autoimmune diseases are more common in some families than others." - By Noel R. Rose,M.D.,Ph.D.,Chairperson, AARDA Scientific Advisory Board;Director of Autoimmune Research Center, The Johns Hopkins University, InFocus, Vol.9, No.2, June 2001

There may be a predisposition...'nuff said...don't depend on 'seeming' hope...depend on the actual research done, accomplishments successful, and so on. A heightening of a possibility is only that...now, that's not to say people shouldn't be encouraged, but don't look for scapegoats, genetic or otherwise, without evidence. I have NO history of AIs in my family going back at least 2 generations...is that enough? No...but it doesn't mean there is or isn't. All I'm saying is that 'hope' is relative to those who need or cling to it...it is not a catch-all that we can or should rely on. If that's what motivates one to press on to possibilities, then have at it. We, on here, are not docs/researchers or the like...don't throw hope out where there is none or doesn't have a leg to stand on...hope...for the best, for a cure, for something better...but not for the sake of hope...please...it reduces one's stress levels if nothing else...and we all know stress kills...

[pberggren1]

I say we these Gene fellows....lol

[marta]

I probably wouldn't have posted that thread had I read through all the other posts past the first page. I'm glad I didn't (read them) and glad I did (post.)

What my point is that they've been doing research with the same mindset for all of these diseases without getting beyond treating symptoms. If we the affected don't push for more research, more out of the box thinking and coming up with new solutions to old problems then who will????

In that article about the gut flora, they talk about how our bodies have 10 Trillion Cells, and we have 100 Trillion Bacteria living in our guts. We are more bacteria than human if you go just by numbers. They also say that the gut flora in children is similar to those of parents (yet each is as individual as a finger print) but don't know how that information gets passed on from parent to child. It's not on the genes but it's getting passed. Could our gut flora and the unbalance of the biome be the root and common thread to all autoimmune disease. It's a new study and as revolutionary to current scientific understanding as finding bacteria was over a 100 years ago. The doctors and scientists of those days were ostracized when they suggested that people are dying and getting sicker in hospitals because of invisible little things called bacteria.

They have in fact found that there is a certain group of bacteria that is diminished in the guts of some patients which help our glands produce testosterone. They don't know the mechanism by which they encourage the testosterone production, but they know it's happening. Autoimmune (with the exception of WG and a couple more) is predominantly a female disease, and that connection makes sense. What's killing the balance in our gut flora? I'm thinking all of these GMO foods designed to work as their own pesticides.bit they assure us that GMO's are not harmful to humans, but what about the bacteria that lives in our guts and is responsible for all sorts of necessary interconnectedness. That's why I'm thinking that more people who aren't necessarily from a long autoimmune lineage are getting sick with autoimmunity (amongst other things)

One final note about thinking outside the box with cures. Here's a quote on C. difficile something I'm sure you're all aware of since we always get asked whether we've been exposed when we go to a hospital. Very hard to almost impossible to treat but 100% success rate by treating it with healthy bacteria.

According to America’s Centres for Disease Control and Prevention, C. difficile kills 14,000 people a year in America alone. The reason is that many strains are resistant to common antibiotics. That requires wheeling out the heavy artillery of the field, drugs such as vancomycin and metronidazole. These also kill most of the patient’s gut microbiome. If they do this while not killing off the C. difficile, it can return with a vengeance.
Dr Mellow has found that treating patients with an enema containing faeces from a healthy individual often does the trick. The new bugs multiply rapidly and take over the lower intestine, driving C. difficile away. Last year he and his colleagues announced they had performed this procedure on 77 patients in five hospitals, with an initial success rate of 91%. Moreover, when the seven who did not respond were given a second course of treatment, six were cured. Though faecal transplantation for C. difficile has still to undergo a formal clinical trial, with a proper control group, it looks a promising (and cheap) answer to a serious threat.

I'm not sure if you're angry with me or not, but I will keep working on this because I believe with all my heart that rolling over and accepting the prognosis of life everlasting with Wegener's is ok, or that my daughter can have this because I didn't do anything about it is ok. It's not OK. Not even close to OK. I will do everything in my power to promote co-operation and a spirit of sharing science to work towards a tangible goal.

I hope I haven't offended anyone with my dreams of finding a cure for our disease and the others on the same bandwagon as us.

Peace and health for all.
We are one, whether we like it or not. We One baby.

marta

[Dirty Don]

Parry & thrust...parry...you are so much fun and are so alive Marta...and thrust...and a jab jus' cuz'!

[marta]

Ha Don. Had to look up Parry and Thrust, cuz I still wasn't sure if I said something wrong.

I'm not so alive when I drop the pred. Been fighting pred wean for a while now.

But on the good side of life, check out my trip to China we all talked about in January: Harbin – Snow Fun | Marmot Moose Goes To China

Take care buddy, and no more parry or thrusting Don, or is that Mr. Dirty... ha ha ha.

[goosey]

I'm fully aware that wegs is a disease of the immune system, before my dad was dx he was in hospital & the docs said that he probably had TB. It was later discovered that it was wegs with lung involvement
that was 25yrs ago & they didn't know as much as they do today. Where I go for treatment they are treating people with wegs in their families.

[Dirty Don]

I'm fully aware that wegs is a disease of the immune system, before my dad was dx he was in hospital & the docs said that he probably had TB. It was later discovered that it was wegs with lung involvement
that was 25yrs ago & they didn't know as much as they do today. Where I go for treatment they are treating people with wegs in their families.

And have the docs provided evidence of such links? Would be terribly interesting and important if such can be verified for the purposes of predicting and exposing WGs.

[annekat]

I trust Marta to be up on the latest research results about whether there is a genetic predisposition to Wegs and other AI diseases. But whatever has been proven has been proven by scientific methods, and not by a poll of a few people, some of whom say there was Wegs, or whatever, in their families. I don't think such a poll is necessary or helpful when scientific data are available to address this issue and to attempt to draw conclusions from.