Well known person just dx’d with GBS
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AnonymousApril 17, 2010 at 7:03 pm
Hi all, just heard this morning that “LuciBird” Johnson, she is the youngest daughter of LBJ, is at Mayo Clinic with a pretty sure dx of GBS. I’ve already posted on the Dallas Newspaper, while I am sorry this has happened to her, she is a very active woman, with such a high profile,involved person now having the disease, hopefully there will now be more awareness. Unfortunately, sometimes this is what it takes. I will be following the story on the Dallas paper, I believe it is Dallas News, dallasnews.com.
Gotta go, but wanted to make you all aware so that you too might go and post a comment.
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Roosevelt had it and “The Fridge” William Perry from the Chicago Bears too.
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for some reason, GBS/CIDP don’t get the publicity that things like MS and Parkinsons and ALS get. Why? I would love to get a grant to study a lot of the things that doctors blow off yet almost all of us have issues with.
I hope the best for her and hope she makes a wonderful recovery, but I do hope there is more than just those positive outcomes. I hope it does bring awareness and I also wish the media would properly state the facts! A rare neurological disorder that leads to paralysis…is that all we get out of that? The one (two) for The Fridge weren’t much better. Give people a reason to research it, give em some meat to chew on. Sorry, just a bit irritable today….but I truly do hope she makes a full recovery and a quick one. -
AnonymousApril 18, 2010 at 10:00 pm
Never feel you need to apologize for being irratable! I often feel the same way. When I first heard to new and the said rare neurological disease I new right away it was GBS. I have just heard of someone local who they suspect is cidp from the flu shot. I guarantee that will not be publisized! I get tired of people assuming I have MS. I can not tell how many people send me the latest cures for ms. The latest break through is exciting but it does not help me in the least.. gets frustrating! I am irratable today too. At church today at least three people came up to me to tell me about this great brea through!
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Yes, it is cidp for the Fridge, he rotted in a nurswing home w/no treatment because they thought it was gbs, Ditka (his old coach) heard he was destitute w/no insurance and came to his rescue. They redx w/cidp and he apparently is now getting treatment and I think he now lives with his nephew in Atlanta. He was such a character. I remember we cut school to go downtown for the parade when they won the superbowl. Watching that big guy dancing in the freezing cold was hilarious. Too bad he was meglected for so long, you would think somone would have reached out. Thanks to Ditka.
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Actually, I forgot if Roosevelt had gbs or cidp? I imagine if it was cidp, his arms would have been affected. It makes you wonder how many others had gbs and not polio.
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AnonymousApril 20, 2010 at 9:53 pm
I watched Oprah interview the Octo mom today….Nadya is SO stressed trying to take care of 14 chilren…barely sleeps……She is pushing herself so much that she is ripe for an autoimmune disease like GBS….I wish she could read our posts so she could be aware of what STRESS could do to her.
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AnonymousMay 18, 2010 at 8:41 am
According to the news:
U.S. court grants asylum to Obama’s African aunt
By Meghan Barr
Associated Press
Updated: 05/17/2010 11:12:19 PM CDTCLEVELAND — A U.S. immigration court has granted asylum to President Barack Obama’s African aunt, allowing her to stay in the country and setting her on the road to citizenship after years of legal wrangling, her attorneys announced Monday.
Medical issues also could have played a role. In a November interview with The Associated Press, Onyango said she was disabled and was learning to walk again after being paralyzed from Guillain-Barre syndrome, an autoimmune disorder. At her hearing in Boston earlier this year, she arrived in a wheelchair and two doctors testified in support of her case.
Perhaps with more high profile peole being dx with GBS.. the funding and information will be increasing in the news.
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