Wegeners Granulomatosis Australia

[mishb]

Hi All,

I have just created (well my daughter did) a facebook group to offer support and general WG information to Aussies.

There are many WG or vasculitis groups on fb, but I couldn't find one for Australian residents.


At this stage, I'm not sure how it will go - but I'm keen to give it a try.....any help and/or advice would be greatly appreciated

My main goal is to help those newly diagnosed with WG and who may be looking for somewhere to turn to for advice.....just like we did on here

Who knows, maybe one day we might be able to get a group or meeting together - just like they have in the United States.

I hope I haven't stepped on anyone's toes by creating a group just for Aussies and I hope Andrew (Chief) will allow me to use a link to this fantastic forum.

[pberggren1]

There are about 4 thousand Weggies in Oz, so have fun.

[mishb]

Thanks Mate :thumbsup:

(Phil actually helped me with this)

[me2]

We could let you have Phil. Oh wait, he doesn't belong to us , he is stubbornly remaining Canadian. So it IS up to you. Sounds like an auspicious beginning. Looking forward to listening in on the new vine growing down under.


Thanks Mate :thumbsup:

(Phil actually helped me with this)

[Geoff]

Good Luck Michelle!!

Speaking from a personal stand point, meeting fellow Weggies gives me a great buzz and a very positive attitude. Organising such a group, will I hope, happen for you; all the best!

[Mikek]

4001 now lol

[mishb]

4001 now lol


I was going to put a like to this and a smiley face........but it's not funny at all.

I'm sorry Jenny :crying:

[andrew]

I hope I haven't stepped on anyone's toes by creating a group just for Aussies and I hope Andrew (Chief) will allow me to use a link to this fantastic forum.

Nice one!! Link away! Link us to the page!!

A

[Mikek]

There's quite a lot of Canadians here too.

[mishb]

There certain are .....aye :flapper:

We have 20 members in the Aussie fb Group, and hope to get more.

We are discussing the possibility of pinning flyers to the specialists notice boards to advise WG patients, of our fb Group and also this forum.

[Mikek]

Hi Phil, Wikipedia says ten cases per million and I've seen a range of different figures. Australia has a population of about 22 million or thereabouts. That suggests a WG population of <1000. Something doesnt add up.

[mishb]

Hi Phil, Wikipedia says ten cases per million and I've seen a range of different figures. Australia has a population of about 22 million or thereabouts. That suggests a WG population of <1000. Something doesnt add up.

Well I still can't find even 100 of them.

My specialists say they see hundreds each year - therefore if we take the major hospitals (excluding the smaller ones) in each State with say 200 patients each year, then that in itself would be 1,400 to 1,600. Maybe 2,000 to 4,000 is a close number. Just a thought

[Alysia]

I never met or heared of even 1 :crying:

[pberggren1]

I have met almost 20 Weggies. 1 in 5,000 to 1 in 7,000 is much more accurate than 1 in 30,000 or 1 in 100,000. There are 3 other Weggies in my town even.

[Mikek]

Unless a worldwide survey was performed we really don't know how the 'Wegener's ' occurrences are distributed or of any localised anomalies .

[drz]

Most people with GPA are probably never diagnosed correctly and when they die from lack of proper treatment they are probably listed as dying from unknown kidney failure. Some with real mild cases think they have allergies or chronic infections. Wegs does not appear equally distributed around the world so climate may also be a factor or the ethnic DNA or diet influenced by culture. My PCP is no Weg specialist and has three other Weggies besides me in a small town so I figure Phil's estimates are probably more accurate for our area.

[mishb]

Thought I would bump this thread back up to the top.

We now have 41 members and 9 of us had a wonderful catch up for coffee........in no time at all 3 hours had passed and it seemed like 10 minutes. A wonderful bunch of people - and we had to use the old saying "Gee you look well" :thumbsup: as everyone did.


So, any Aussie's that also have access to facebook - check us out and come and join the fun

[Alysia]

So, any Aussie's that also have access to facebook - check us out and come and join the fun

I want to come to Australia and be with you all... :crying: :love: :hug1:

[Geoff]

Congratulations Michelle!! Wonderful news and doesnt it make you feel good to meet and share life with fellow Weggies??!!

[NikkiNicole]

I have found the FB Vasculitis and Wegener's groups to be a great help to me. I am a member of a few of them and just being able to communicate with even more people and hear their stories and talk with them has been a tremendous plus. It's so so so so so so so hard to not be able to talk to whomever I want to about this. I am so happy to have found this place and those groups so I know that your Aussie group will be a big hit!
I've seen so many posters on here who are from Australia ... and Canada. It seems us State-siders are the minority!! :rolleyes1:

[pberggren1]

I think most of the members here, even the most active ones, are in the US. I find the groups on facebook are mostly US members.

[NikkiNicole]

Apparently I haven't spoken with a lot of them then. haha.
I'm so happy your group is already having meet-ups!!! How wonderful. I have "heard" of another weggie here in Sonoma County but I do not know her. It's a friend of a friend. I spoke with one of the bosses the other day and she is the only one of our department (several hundred employees) who has even heard of Wegener's. It must be all the fresh air and wine we have here, keeping everyone healthy!
Except, the wine is now off limits to me ... but it still looks pretty!!!

[pberggren1]

It has to be the wine hun.....that only makes sense.....:razz: