G551d kalydeco/vx770

robert321

New member
With all the frenzy of the 770 getting passed through the FDA rumors are rampant. I have read in blogs and forums everything from people claiming to feel "normal" and come off of other treatments (it is to my understandingthat thisis strongly discouraged) toa NY Times article that says patients "have been able to shovel snow for the first time" to people claiming that it is more of a research and development victory than it is a miracle pill and is just "another pill". I'm not sure if the study subjects are allowed to talk about the results yet or not and that may be why I'm finding mostly second hand information and rumors. So my questions are;
Can the study subjects discuss the results without risking tainting results?
Whatare the benefits patients are actually seeing? Any GI improvements? Quality of life? Weight gain? etc. Is it the magical pill the press releases are talking it up to be?
 

robert321

New member
With all the frenzy of the 770 getting passed through the FDA rumors are rampant. I have read in blogs and forums everything from people claiming to feel "normal" and come off of other treatments (it is to my understandingthat thisis strongly discouraged) toa NY Times article that says patients "have been able to shovel snow for the first time" to people claiming that it is more of a research and development victory than it is a miracle pill and is just "another pill". I'm not sure if the study subjects are allowed to talk about the results yet or not and that may be why I'm finding mostly second hand information and rumors. So my questions are;
Can the study subjects discuss the results without risking tainting results?
Whatare the benefits patients are actually seeing? Any GI improvements? Quality of life? Weight gain? etc. Is it the magical pill the press releases are talking it up to be?
 
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