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Thread: Expanding our coverage

  1. #1
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    Default Expanding our coverage

    One of our members brought up an idea that had been suggested to me some years ago and I'd elected not to proceed with. This idea was to expand the forums to cover other AI diseases as well such as Graves, MPA, Lupus, MS etc. I'm almost positive some of our number have scored the jackpot and have WG and Lupus for example.

    Effort-wise it's not a huge deal - just a matter of creating a few new forums. Might also need to change the name of the site perhaps too. Would still be accessed via the same domain name (wegeners-granulomatosis.com) and probably by other names as well. Just might change the name at the top. I dunno - thinking out loud.

    Thoughts/comments/suggestions welcome. I'm kinda partial to the idea. If done right would expand this community quite a bit.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Where would it stop at Andrew?

    Would you make it everything Vasculitis or everything Auto Immune........that's huge

    I have WG, Lupus and MCTD and I am on other sites that are just for Lupus or just for MCTD - I kind of like it just WG but think it could be expanded to everything Vasculitis
    ......that's me just thinking out loud too
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  3. #3
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    Hi Andrew

    I agree with mishb it would include an enormous amount of AI related topics, specific information for each problem could get lost amongst the postings. Some people I know do like being on individual sites because of the ease of using them. Another one just thinking out loud too

    Rif

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    I tend to agree with Mish and the other two above, although I'm just waking up and starting to think out loud. Our condition is less well known than say, lupus, and people recently dx'd with WG are more in the dark and possibly freaked out by having something so rare and scary sounding. Finding a site especially for WG, with so many great people on it, was very comforting for me when I first came here. If it had been for vasculitis in general or autoimmune diseases, it would have seemed less personal and more like being lost in the shuffle. There's a vasculitis group on Facebook where we can learn about other forms and meet those folks. We are already supportive of people with other conditions than WG who happen to come our way. So I'm leaning toward keeping this one as it is, but am open to changes if enough people agree to them.
    Anne, dx'ed April 2011

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    Don't do it...density obscures the problems and answers we seek...got enough problems at the grocery store as it is!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    I think expanding the scope of this forum would esssentially duplicate the Vasculitis Foundation's Facebook page. Wegs has so many nuances and quirks that I think would be lost in the clutter of all the other forms of Vasculitis and AI diseases. Put me down as recommending against expansion.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    First I figured it would be a good idea to include say all vasculites... But then I thought about the Vasculitis FB-page which is really cluttered as you never know what vasculite they have, and hence their advice might not be relevant at all. So I would vote no.

    I think MPA could well be included here though, since its quite similar to Wegs.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Hi Andrew, whilst its great to keep the Forum "fresh" and innovative, I have to agree with the others who have posted and say I would be against this particular idea.

    You have only to scan a small sample of the posts to witness the diversity of this illness, and I sometimes wonder if I have the same disease as others who post! Imagine how crazy it would be when you sign on and scan the new posts if we expanded the Forum? I think I would glaze over and lose interest and attachment, after all we are a special bunch of souls!

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    I am in agreement with everyone. Well put!! Don't do it Andrew.
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

  10. #10
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    I think the forum is great as is. I sometimes don't get round to coming on the forum for a while and it takes a few days to catch up with everything and everyone. Expanding it would make it less personal. I feel like we're quite a close knit community here and wouldn't want that to change.
    Well done on asking for our opinions though and not steaming ahead with it.
    Diagnosed April 1995

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