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Thread: My new plans - I'm sharing my crazy ideas so I can be held accountable

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  1. 10-03-2012, 11:35 AM #1
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    Debbie C
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    This may said bad but I don't mean it in a bad way ...but it's a shame we haven't heard of any well known person...singer,moviestar or someone high in power with this desease,that would certainly help the cause.But I wouldn't wish this on my worst enemy...but theres got to be someone out there,we just haven't heard about them yet
    Life isn't about how you survive the storm, but how to dance in the rain !
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  2. 10-04-2012, 03:09 AM #2
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    Quote Originally Posted by Debra C View Post
    This may said bad but I don't mean it in a bad way ...but it's a shame we haven't heard of any well known person...singer,moviestar or someone high in power with this desease,that would certainly help the cause.But I wouldn't wish this on my worst enemy...but theres got to be someone out there,we just haven't heard about them yet
    You are not being bad, I get it.....it would be nice to have a well known spokesperson.
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  3. 10-04-2012, 03:18 AM #3
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    I agree, there's got to be someone well-known out there who has Wegener's.....
    Anne, dx'ed April 2011
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  4. 10-04-2012, 03:20 AM #4
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    Marta, I'm so looking forward to hearing more about your great plans and ideas! There must be someone on here who knows a lot about website design or can point you in the direction of a suitable prospect.
    Anne, dx'ed April 2011
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  5. 10-05-2012, 02:20 PM #5
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    I believe Nick Cannon (Mariah Carey's husband) has wegeners. He has an autoimmune disease but he hasn't said which one. However he has been in the hospital due to kidney issues and long problems, and had to give up his radio show.
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  6. 10-05-2012, 03:18 PM #6
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    Quote Originally Posted by carriej22 View Post
    I believe Nick Cannon (Mariah Carey's husband) has wegeners. He has an autoimmune disease but he hasn't said which one. However he has been in the hospital due to kidney issues and long problems, and had to give up his radio show.
    Wow, wouldn't that be interesting if he does?
    Anne, dx'ed April 2011
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  7. 10-05-2012, 03:24 PM #7
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    Nick Cannon appears on Good Morning America to discuss recent diagnosis - College News
    According to the research I just did, Nick Cannon has lupus nephritis.... it would still be interesting to find a celeb with Wegener's, but his having a rare autoimmune disease is significant in itself...
    Anne, dx'ed April 2011
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  8. 10-08-2012, 10:02 AM #8
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    Hats off to you, Marta! While I don't know a celebrity with the disease, remember that Tim Tebow (former QB of the Florida Gators and now in the pros with the NY Jets) got national attention when he recognized a young fan (girl) who has WG.

    Wegener's Disease: Tim Tebow makes a dream come true with a Bible and friendship - National autoimmune disease | Examiner.com

    I mentioned it in a post, too. http://www.wegeners-granulomatosis.c...interview.html

    Perhaps he would be interested??

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.
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