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Hi Maureen
I guess you have googled Wegener's Granulomatosis? I know they have a lot on it - just like all the other autoimmuine diseases. So sorry to hear you have it, but I found google excellent for my auto immune disease info and actually found a group to join - I have Sjogrens syndrome - equally as obscure, but not life threatening!
 
Good luck with your search for info,
 
Greta
----- Original Message -----
From: [log in to unmask] href="mailto:[log in to unmask]">Maureen McBain
To: [log in to unmask] href="mailto:[log in to unmask]">[log in to unmask]
Sent: Friday, December 29, 2006 12:49 PM
Subject: [OCC-HEALTH] Wegener's Granulomatosis

Dear list members
I know some of you personally and others not at all. So please let me re-
introduce myself. I currently work at Robert Gordon University in Aberdeen
doing evluation research and am the current Chair of the RCN OHN Forum
Scotland and those of you that know me will be aware that I am passionate
and committed to OH nursing practice, management, education and reseach as
I see them all as being equally important to the profession.

However although in my role as a researcher I have excellent information
and research resources to hand simply becasue I work within an higher
education context. And it has been about and year and a half since my last
practice potition as I went back to work as an OHN in one or our local
paper mills and therefore enjoyed "dual role" for a number of
months,spliting my time bewteen research and practice.

But I now want to try and find out if any of you have ever heard
of "Wegener's Garnulomatosis". The reason I ask is that I was diagnosed
with this serious life threatening illness four years ago and have been
trying to live with it ever since. When I was first diagnosed none of the
GP's in my practce had ever seen a case and netiher had I! My renal
function tests have always been clear so my prognoses is said to be good as
in I should live to 60 maybe 65 (if one believes the current statistics).

So I guess I want to know if any of you have ever heard of it and if so
were the employees able to continue working or not? A USA survey in 1997
showed that the majority who worked >40 hrs per week had to reduce their
hours but few 8% actually changed occupation.

I am not looking for information of support groups becasue to my knowlledge
there is no support group in Scotland (and none in Aberdee) but I am aware
of the Midlands group, the Stuart Strange and the West Sussex and of course
the Wegener's Granulomatosis/ Vasculitis Foundation (of which I subscribe
to their newsletter.

But as an OHN, researcher and someone who believes in education I am
interested to find if any or how many of you have ever heard of this
illness in the first place.

I look forward to your replys.

Many Thanks

Maureen McBain (Mo)

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~~~~~~~~~~~~~~~ Please remove this footer before replying.

For list archives and documents, go to http://www.jiscmail.ac.uk/lists/occ-health.html

FORTHCOMING CONFERENCES AND EVENTS: http://www.jiscmail.ac.uk/cgi-bin/filearea.cgi?LMGT1=OCC-HEALTH

For Occupational Health jobs, go to http://OHJobs.drmaze.net

Find out about Occupational Health Nursing Education in UK at http://home.wlv.ac.uk/~in6232/aohne/