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

  1. #11
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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

  2. #12
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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

  3. #13
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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.

  4. #14
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    Hey Guys,

    You are all amazing. I thank you for your kind words and support.

    I will do my best to do us proud. I have a few local celebs in mind and will try for some less local, but what turns turns. I'm putting the emphasis on autoimmune disease, and there are certainly lots of celebs with one of the 140 diseases that fall under that umbrella, so the fishing pond becomes bigger as we move further out of our itty bitty little puddle.

    You guys all rock and are my inspiration. We were dealt one of the crappier hands of cards but it makes us tougher and more persistent - the world wont know what hit them when we come out of our Weggie closet.

  5. #15
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    Marta I just think you are one of the most amazing women I know. You are a total inspiration! You go girl!!!

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    Quote Originally Posted by aewaustin View Post
    Marta I just think you are one of the most amazing women I know. You are a total inspiration! You go girl!!!
    Ditto.....

  7. #17
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    Just a quick update...

    I have backed out of the conference plans for this year because getting our society all legal and in the books is taking longer than I anticipated, however PJ Day is on. Here's a poster that I'm going to spread around town for next week, and I already have a TV interview booked and working on a few more.... well I can't seem to add pictures on this forum so just go to my blog and you'll see it there Weggies Unite

    But the real reason I wanted to post something on here is because of an interview I heard today that actually made me cry as I was listening to the radio... this is what Al and I were talking about before he passed, this is it. This is the road to finding a cure for us all that has never been explored and makes so much sense. I now know where any money raised is going because I think this is where we will see our lives come back to our old lives from and where our kids will be spared the rollercoaster ride we're on...

    Audio

    Here goes. Our lives change every second, but some seconds are more significant than other seconds... this is one of the most significant seconds I have had since diagnosis.

  8. #18
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    This makes sense seeing that the gut is a major part of the immune system.
    Phil Berggren, dx 2003

  9. #19
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    The report you linked was fascinating, Marta. It will be very interesting to follow this research. Thanks very much for sharing!

  10. #20
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    Wow Marta that was very interesting. I went to my obgyn for the first time in a couple years about a month ago and had my hormones checked.And he said my testostrone level should be between 40-60 and mine was -4 !! He had a compound co. make up a special lotion that are in syringes and I am supposed to rub 1mg on my leg a day. I haven't done so yet because I have been having gut issues. When I had my upper endoscopy done ,I have a small hiata hernia and a small part of Barretts esphogitis. I wonder if my low level is causing my stomach issues ?? I have been a little under the weather lately so I didn't try any thing new until I got other issues sorted out,but maybe I'll start it now. I may also email that segment to my dr. at the Cleveland Clinic.
    Life isn't about how you survive the storm, but how to dance in the rain !

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