Survey Results - check'em out

[marta]

Hey Gang,

Just got back from the city and thought I'd do something productive. Here are the results from our survey. At time of posting this thread, we have filled out 94 surveys. WOW!!!! Thanks everyone for your time and energy.

Click the link below and you can see the summary and the long answer responses. It's quite interesting.

Survey Results (http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96e kw28_3d)

[Sangye]

Very interesting data, Marta! Thank you so much for doing the survey. The question about our lifestyle pre-Wegs made me tear up-- so many people said how strong and healthy they were, all the things they could do. There's a lot of loss on that page.

[elephant]

Thanks Marta again for doing this. We all together make this forum educational!

[Thakator]

I too thank you for your efforts on our behalf; intersting to note the commonalities. Ron

[marta]

It was totally a pleasure, and I'm blown away at how many responses we have. Totally blown away!

I too had a little cry when going through some of the answers Sangye. From feeling like you've totally got it together to that 'what the **** is going on with my life' feeling.

The commonalities are quite interesting and I think this will also come out in the book which makes me think that it should almost be something that is a manditory read in med school - ENT school for sure as so many of us ended up there first (right after our GP's). Oh, to dream the impossible dream.

[Jack]

ENT docs don't seem to come out of this too well. We have a high percentage with sinus issues and almost as many seeing ENT specialists, but only a dozen went on to be diagnosed by them.

[drz]

ENT docs don't seem to come out of this too well. We have a high percentage with sinus issues and almost as many seeing ENT specialists, but only a dozen went on to be diagnosed by them.

My ENT doctor had recommended a biopsy to check out why I frequently had bloody scabs in my nose, but then I got jerked around by other doctors who couldn't agree on who should do it so I ended up in hospital before i could get it done. I wonder if it would have shown anything.

[pberggren1]

So you never did have a biopsy drz?

[drz]

So you never did have a biopsy drz?

My diagnosis was confirmed by lab work and kidney biopsy since I had kidney involvement.

[dunkie2202]

Awesome job Marta thankyou

[JanW]

Awesome job, Marta!

I'm scheduled to take part in a focus group of Weggies in the NYC area (they are apparently trying to get three of us -- which shows you how rare it is), during the first week of December. I was contacted through the VF, and then screened by a surveying company. It sounds as though it could be sponsored by a pharma company -- it's supposed to be about 'experiences and feelings' but they had to call me back when they found out that I was on mtx alone because they weren't sure that 'qualified.' I will definitely keep you guys posted!

[Geoff]

Great Work Marta,
If you dont mind I'll pass it on when I next go to Addenbrookes.:thumbup:

[marta]

I didn't do anything other than put my own questions down on paper/or keyboard and you guys did all the work. The value is all in what YOU did.

That's cool Jan, I'm curious what kinds of questions they ask.

Geoff, absolutely. It's anonymous and it's public domain since it's out here. I just sent the link to the Vasculitis foundation in case they want to take a boo and see if they want to do anything with the collection of info. Who knows.