I want to start off by thanking you all for the wonderful messages and support. The response since the Global Health Matters piece has been mind-blowing. Thanks to the gang at Global (Christine, Su-Ling, and Paul) for making it happen and the opportunity to reach so many people in our area (and beyond) that are in need to connect with someone going through the same poopy roller-coaster ride. This experience has opened my mind up to the possibilities and the power of media to get people moving. I feel like this might have been an interesting and crucial first step to something bigger than all of us.
It's great to connect with other Weggies and to let the world take a peek inside the whirlwind existence of a Wegener's patient, however I have a feeling that this is all happening for a very defined reason... a reason that has been gelling in my head for several months now and the certainty and feeling I have in my gut gets stronger with each passing day. If you've been following my rantings on this blog, you've seen me mention this previously, but I feel such a primordial pull to go further with this that it's very hard to ignore or push aside.
Wegener's is small (doesn't feel like it when you're in the thick of it, but relative to the big picture it's small). How do you get anything of significance done for something that affects one in 30,000 - not very many interested stakeholders, other than sufferers, their families and friends, and the amazing but SMALL group of doctors who specialize in vasculitis. The problem is a bigger one. And within that problem lie unprecedented opportunities for discoveries that can be world changing. For real. The issue and the bigger problem is to find 'the common thread' to Auto Immune Diseases in general. AID (auto immune diseases) are huge... they affect a significant percentage of the population which means there are literally billions of people suffering in silence, feeling segregated from others because of the way that AID are themselves segregated from each other. There is an article I have linked to in an earlier post (Through the looking glass) which talks about how before the discovery of bacteria and how to treat it, infectious diseases were much like AI diseases are now. Because they affect different organs/systems they were treated by different doctors and not a lot of inter-communication. Just close your eyes and imagine the moment someone finds that 'common thread' for AI disease, what a life altering event that would be for millions and millions of people throughout the world. The cost of chronic health care would drop drastically as AI is the biggest cause of chronic disease.
I'm not a scientist, but I am a loud mouth schnook, and that's worth something. So there. This whole thing gives me goosebumps.... how about you?
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
May you long continue to be a loud mouth schnook, Marta! Indeed, we would not be truly human if we were not always yearning to be something greater than ourselves. (I realize this drive can be perverted, and yet it is a wondrous and undeniable thing.)
ReplyDeleteYour question, about how to get anything out of a small number of stakeholders, can, I think, go further: The fact is that we are all minority participants in important issues. Forget Wegener's specifically; the majority of people have not (yet) been diagnosed with a dire disease, so...why should they care? Of those, a minority have lost their jobs, or had their homes broken into, or just had a flat tire, so...why should we care?
Yet this may be too large a project for one mortal. Just sticking to AIDs would, it itself, be a worthy goal.
You are onto something important, my friend. We will, I hope, watch your back, at least. Perhaps it is a trek we can all make together!
Al
Al, I love your way with words. I really enjoy reading your posts on the forum, and now on here. You're a wise man and I love the way your brain works. I will continue to raise as much awareness for us Weggies as possible with my 'schnookiness' but I think where the big opportunity lies is in the search for the answer for the greater(est) number of people. Someone out there has the answer to the question, they just don't know it yet. But I think it's time. Just like when Einstein came up with that simple little equation (seemingly simple) at almost the same time that others were working on the same tangent... it was time for humanity to go to that next step... It is now time for humanity to discover a cause/cure for all AI diseases. It is time. I feel it in my aching joints.
ReplyDeleteI'm thinking of the holocaust moral tale: When they came for the Hutus (or whatever), I was silent, as I was not a Hutu. When they came for the Tutsis, I was silent, for I was not a Tutsi. Then they came for me, and took me away, for there was no one left to speak for me.
ReplyDeleteThe way out of the paradox, maybe, lies in, as philosopher Peter Singer has suggested, "widening the circle"--blurring the lines between Us and Them. Politicians of the demagogue persuasion (if that's not a redundancy), of course, will, for their own nefarious purposes. play the game making that line a sharp one.
Bless you for going the opposite direction. It is also an usual direction for someone with a serious medical condition. Often, such patients are encouraged to contract into a near-private, and very small world. Bless you, Marta, for your choice in this as well!
Al