GBS has hit someone quite famous
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April 17, 2010 at 4:12 pm
[I]Lucy Baines Johnson has been diagnosed with GBS. She was treated initially at a hospital here ( Austin, TX ) and then moved to the Mayo Clinic in Rochester, Minn. She is already being treated with IVIg.
As awful as it sounds, perhaps this will give more attention to GBS and its mirror twin CIDP.[/I]
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April 17, 2010 at 4:36 pm
It is tragic for anyone to have to endure this illness. As sad as it is, it will indeed give our illness more recognition.
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April 17, 2010 at 10:58 pm
Sadly, Rocky, I think MOST people under the age of 50 are going to respond to that story with, “Who the he!! is Lucy Baines Johnson??”
😉
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April 17, 2010 at 11:53 pm
I hope she had a full recovery from GBS and stimulates a plethora of research into these rare nerve disorders to boot.+
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April 18, 2010 at 2:20 pm
I guess my other hope, beside attention, would be that SHE uses her family money and influence to start an endowment or other vehicle to research treatments and diagnostic support. If she could encourage some of the “family friends” to monetarily support GBS/CIDP research, we could see some “serious money” thrown towards this disease!
Elmo
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April 18, 2010 at 4:51 pm
[QUOTE=Elmo]I guess my other hope, beside attention, would be that SHE uses her family money and influence to start an endowment or other vehicle to research treatments and diagnostic support. If she could encourage some of the “family friends” to monetarily support GBS/CIDP research, we could see some “serious money” thrown towards this disease! Elmo[/QUOTE]
[I]Yes, indeed, Elmo. There are far reaching tentacles into some serious money in that family and family friends. Now that the disease has hit them personally, I wouldn’t doubt it a bit that there will be funding available.[/I]
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April 18, 2010 at 5:01 pm
There are ways we can help donate money, when my mother in-law passed, my father in-law asked that donations be made to the foundation for research. There were very generous people that made donations.
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April 18, 2010 at 7:03 pm
As news was of the ‘hospitalized due to a rare neurological condition’ w/no details.
Well, she won’t have to worry about medical bills at least…unlike most of us. Whether she decides to sacrifice her privacy for any advocacy will be determined in the years to come.
Even something as small as encouraging blood drives? Could really help bring awareness to our issues and the many other immune issues that seem to be ever increasing.
We can hope, but we cannot make another do what they do not want to do. -
April 19, 2010 at 11:06 am
[QUOTE=homeagain]As news was of the ‘hospitalized due to a rare neurological condition’ w/no details.
Well, she won’t have to worry about medical bills at least…unlike most of us. Whether she decides to sacrifice her privacy for any advocacy will be determined in the years to come.
Even something as small as encouraging blood drives? Could really help bring awareness to our issues and the many other immune issues that seem to be ever increasing.
We can hope, but we cannot make another do what they do not want to do.[/QUOTE][I]She is heavily into philanthropy. So I would expect her, personally, and her family and her foundation to make substantial donations, though [U]always[/U] quietly.
Her situation sounds more like CDIP rapid onset to me, though what-do-I-know? The news reports still say GBS. Apparently she has improved substantially since receiving IVIg starting a few days ago.[/I]
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GBS has hit someone quite famous
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April 17, 2010 at 4:10 pm
[I]Lucy Baines Johnson has been diagnosed with GBS. She was treated initially at a hospital here ( Austin, TX ) and then moved to the Mayo Clinic in Rochester, Minn. She is already being treated with IVIg.
As awful as it sounds, perhaps this will give more attention to GBS and its mirror twin CIDP.[/I]
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April 17, 2010 at 7:05 pm
Rocky, just saw your post after I started a thread, too. Sorry about that.
I think most people on this forum are too young to know who she is. I campaigned for her dad in 1964.
Will be interesting to see what eventually comes of this, I agree, it will create more awareness in the medical community. Too bad it has to be this way.
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