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.
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