post your links to downloadable information sheets on WG here

[Hammy8241]

Please can you add any links you have/find to any WG information sheets so that we can review them and give an opinion on which, if any, are best to be linked to from our site. (subject to Andrew agreeing & legal constrictions if any)

Just keep this thread for links only please for the first few days to make it easy for people. We can do a poll to find out which people think is best/most helpful in a week or two.

Your starter for 10?
http://www.stjames.ie/Departments/DepartmentsA-Z/I/Immunology/DepartmentinDepth/Wegeners.pdf

(thxs to pwc51)

http://www.uveitissociety.org/pages/diseases/wegener.pdf

http://www.vasculitisfoundation.org/sites/vasculitisfoundation.org/files/VF_Wegener_27s_Brochure_12_08.pdf

http://www.orpha.net/data/patho/GB/uk-WG.pdf

This one is no good for general information but follow the link and type in wegeners and a world of information will open up to those who are clever. Not me - too muich info!) Online Associate | Free Download Books , PDF, MS Word and PowerPoint (http://onlineassociate.net/)

[Lightwarrior]

Great links Hammy, you are indeed clever and I personally think you should be able to recycle those injection syringes as darts. (LOL)

[DEE]

I soent alot of time re reading the Stuart Strange Trust /Enlighten yesterday , it had some very interesting points in their recent news letter and fundraising ideas
i had forgot some of the information that i had originally read althogh saved onto laptop when first dxt
just shows that maybe we should re read more often found a useful phone number to help sort out benefits in uk if im going to be unable to return to work soon nearly used all my work sickness leave up DEEx

[marta]

I stumbled on this one yesterday... very intersting

Wegener's Granulomatosis Triggers (http://www.suite101.com/blog/daisyelaine/wegeners_granulomatosis_triggers)

[Lightwarrior]

I stumbled on this one yesterday... very intersting

Wegener's Granulomatosis Triggers (http://www.suite101.com/blog/daisyelaine/wegeners_granulomatosis_triggers)

That is interesting. I spent 10+ years in New Mexico trying to keep a nuclear waste dump closed because the decision was politial and not based on science. Workers in the dump told me all the time that they had secretly been storing waste there for years and I was fighting a losing battle. I wonder whay my heavy metal/radiation related results would be?

[elephant]

I wondered that myself. But wouldn't the WG specialist look into that and done a metal ( blood test panel) on us?

[Psyborg]

I stumbled on this one yesterday... very intersting

Wegener's Granulomatosis Triggers (http://www.suite101.com/blog/daisyelaine/wegeners_granulomatosis_triggers)

Wow...We had a refinery across from where I work that had a gas leak last December a few months before my symptoms started showing up. Hydrogen Sulfide in my case.

[DEE]

iwas given this leaflet when first dxt www.btinternet.com/wegners.uk (http://www.btinternet.com/wegners.uk)
is the second post down DEEx

[JanW]

I am glad that she mentioned at the end that they aren't sure if the increased rate of WG is due to better reporting or more actual cases. Considering how rare the disease is, and how it was almost certainly fatal going back 35 years or more, I wouldn't be surprised if it really is due to better reporting and more awareness that more vasculitis cases are being discovered.

I'm sure that the environmental link will be one that scientists will continue to look at.

[marta]

A couple more....

there are some books here as well that I haven't seen before:
Books wegener'sgranulomatosis (http://patricebrown.wordpress.com/books/) ( I have the coping with prednasone book at home and it's great, gave me a real good heads up on what to expect)
wegener'sgranulomatosis (http://patricebrown.wordpress.com/)

[Sangye]

I wondered that myself. But wouldn't the WG specialist look into that and done a metal ( blood test panel) on us?
No. The best way to test for heavy metals is by hair analysis. It's accepted science, but many MDs are still skeptical because of misinformation.

When I was first dx'ed I did a hair analysis. The only levels that were high were barium and another metal (can't remember!) that isn't really linked to any diseases. The southwestern US has high levels of naturally-occurring barium. Anyone living there for many years will automatically have higher levels.

Could we move this conversation to a new thread? It's a good one.