WG guide for the newly diagnosed

[Birdie]

I had a thought, it doesn't happen often so I try to respond when it does. The thought goes like this...

In a bit over a week since I found this forum I've seen several new Weggies show up looking for help. In addition the stats on the bottom of pages indicate there are always many visitors searching the threads. The combined wisdom (experience induced) of this group is incredible. It's obvious to me that this group could work together and create a comprehensive guide for WG newbies. Something I could have really used when first diagnosed... It doesn't seem to exist anywhere. You can pick up bits from many places but nothing spells it out like this group could. Plain talk, from the heart, not scary yet not whitewashed either. All in one place, easily printed.

Is there the will to do it?

I started an outline and put it on my personal web space. Just a starter to show what I'm thinkng. It could end up completely different.

Wegener's Guide

If the link doesn't show up you can find my site listed on my profile page, at the bottom of my "About ME" tab. My home page has a link to the outline I'm talking about.

[Alysia]

Nice. Please continue...
And... if you go to each forum section you can find in the beginning of it "sticky" threads which contain special important info.

[Pete]

Good start, Birdie! I started something similar a couple of years ago. I'll rummage around in the archives and see if I can find it later...

[Birdie]

Nice. Please continue...
And... if you go to each forum section you can find in the beginning of it "sticky" threads which contain special important info.

I don't think any individual has the ability to do this. Expect it needs to be a group effort to be worth doing.

I'm thinking of an open work like wikipedia. Everyone who can, contributes... Get it done and Andrew finds a good place to host it on the forum.

The wisdom in 20 pages of one thread could be summarized into a couple paragraphs which answer all the newbie's instant needs/questions on the subject.

Or maybe I'm nuts.

[Birdie]

Good start, Birdie! I started something similar a couple of years ago. I'll rummage around in the archives and see if I can find it later...

Yipeee! That's the attitude I'm hoping for.

[Pete]

Hi Birdie,

Here's some writing I did awhile back: http://www.wegeners-granulomatosis.c...ng-wg-gpa.html

Hope it's helpful.

[Birdie]

That is so cool Pete. I was just pulling your attempt out and running it around again, without knowing that's what I was doing.

Give me a bit to study your old thread.

[Pete]

Gary,

I think the big challenge after getting this compiled into an easily viewed format is to make it more visible. Perhaps Andrew can help us with that.

[drz]

I thought Mayo covered this pretty well on their web site. What can we add to it?

Wegener's granulomatosis - Mayo Clinic

[Birdie]

I thought Mayo covered this pretty well on their web site. What can we add to it?

We won't know what we can add to it without trying. Was not really thinking of adding to anyway. New perspective from the horse's mouth instead of a few paraghraphs that make no mention of important facts. Until I found you'all I had no idea... example: Met a woman in the hospital in bad shape after only a few months, heard a few months later she was still in ICU, on ONE THOUSAND MG of pred. Doctor never mentioned her again. The only other three patients I'd heard of were also never heard of again. Yes, I'm trying to be delicate.

Lost my insurance recently, can't work, no insurance... Had to get records from hospitals, doctors, labs... for SS disability and Veterans Hospital. Records were censored, pages missing, like freedom of information requests. That is the medical community's attitude. They don't provide straight talk. I have never been able to get prognosis from any doctor. They bounce around and start a discussion instead. At the discussion's end they didn't give a prognosis. It was very frustrating until I found this forum.