Absolutely NOTHING scientific about this at all.
I was lying in bed after coming home from the hospital and thinking about things that have been swirling in my mind about patterns with this disease. So I put together a little survey just to settle my curiosity. Here it is. If you've gone on this crazy ride and you want to put some thoughts down - it's only 10 questions long and very easy to answer. I'll post the results and we can do our own informal little inquisition.
Here's a link: http://www.surveymonkey.com/s/LGMC9Y8
Thanks and I look forward to see if my post hospital musings have been swirling in a logical manner.
UPDATE and RESULTS
Whoa! When I posted it I didn't expect more than a dozen responses. When we hit 33, I was super excited as it gave a statistical basis and now look at where we are. Thank you fellow Weg Heads (as my new doc thought we should call ourselves when I told her we're Weggies). Check out the results page below. Very interesting.
http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96ekw28_3d
THE COOLEST THING EVER
The results of our survey were written up by Dr. Yacyshyn, and Dr Christian Pagnoux, and published as a abstract this fall in a rheumatology journal. So thanks to all of you for being part of something cool.
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')
