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Thread: Facebook Groups

  1. #1
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    Does anyone belong to a helpful Facebook group focused on lupus? I am wary of joining one with dubious posters claiming to have "the cure". Wondering if anyone can suggest a group. Have you heard of the Lighthouse for Lupus group? Thanks!

    Heather

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    I will not ever join one, that talkes about a cure for Lupus.
    I have joint two, one for Lupus and one for RA, but because of brainfog, I can't remember the names. I will check it out and let you know. All they do, is share info.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Yes I joined one that I really like on Facebook that is called "It's A Lupus Thing". You can't look at any of its content or post anything until you apply to join and are approved.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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  5. #4
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    We have a group on facebook. It is also called WeHaveLupus. The members there are informative (as many of them are also members here) and supportive. I am sorry to say that I do not administer the FB page as often as I do this website, but the members there keep it pretty actrive.
    Perhaps someone will come along with other FB pages devoted to Lupus that they have found to be reliable and helpful. I wish you the best.

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

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    For those of you with the possibility of MCTD.. I'm on a group on Facebook called simply 'MCTD'. I think it's bvery private and a closed group, so if you try to search it you will have a hard time.. The admin found my on a scleroderma forum online and asked if I wanted to join. It's very supportive and great if you are in the middle of a diagnosis of many AI diseases. Everyone there is so open to discussing their experiences and advice.

    If you are interested, PM me and I will ask the admin to add you!!
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

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    Would love the MCTD group. I think I looked for one a long time ago and couldn't find one. I also belong to like 5 lupus/chronic disease groups on facebook. The good ones that I like that don't get the "cure all" crap are secret private groups though so you would have to be friends with someone in the group first to be added.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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