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Thread: Is there enough support?

  1. #1
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    Question Is there enough support?

    Hi,

    Just a general question for people from all over the world. Do you feel that there is enough support for people with lupus? I never see or hear much about lupus in the UK but I was wondering if anyone else here has or if people anywhere else in the world have better information or support?

    If you reply could you please let me know where you're from and what support you have or haven't come across.

    Thanx,

    Harriet xxx

  2. #2
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    I am in Utah in the U.S.

    We have a local chapter of LFA, but,that's about it. The local chapter is trying to become more and more active, and bring attention to itself and Lupus through community outreach, and they have monthly get togethers at a restaurant in the Salt Lake City area.

    For me, there isn't anything in my community. I live too far from the Utah Chapter of LFA to participate in the monthly gatherings, and I don't know anyone in this area that wants to meet or otherwise support each other, so, I find my support mostly online, especially here.

    My daughter is competing for our city queen title on a Lupus Awareness platform, and if she gets the title, she will have the city's help and support in promoting that awareness in our area, as well as, going onto the state competition and if she gets the title of Miss Utah, she will have statewide attention for the cause. Miss Utah then goes onto the Miss America competition, so, perhaps she will be able to bring national attention to the cause that way. It all depends on how the local pageants go.

  3. #3
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    The need for more support, information, resources, and understanding is precisely the reason why WeHaveLupus was started.
    From my own personal experience, the amount of support and information has doubled since the inception of this group (I am only using that as a marker, not a reason!). While more needs to be done, I do believe that efforts are being made and many are being realized in the area of getting information out and providing support!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Where I live we have a lupus support group that meets just up the road from where I now live. I haven't been to a meeting in a long while.

  5. #5
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    i live in the east bay of the san francisco bay area and while there's a 'local' LFA chapter, it's not near by by any means. they active, have monthly events, but they're not convenient to where a large segment of the bay area lupus population is. for example, i'm only 20 minutes from san francisco, but well over an hour from the local LFA, but they bill themselves as the san francisco chapter.

    the two main 'lupus' doctors here (they're pioneers and lead all the clinical trials for sle in this area), the bulk of their patient population and the 3 hospitals they hospitalize their patients aren't close at all to the chapter, yet i know they've complained about participation.
    be well
    angela
    ~~~~~~~~~~~~~
    diagnosed 2004 with sle affecting my heat/brain/cns, pulmo fibrosis, and vasculitis
    not a newbie here, been a "we have lupus" member since 2004 under the name ang192

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