Thursday, 27 June 2013
FDA advisory board has voted against Bronchitol (aka: Mannitol) ... BAD VOTE FDA!!!
Bronchitol has helped me in a way Kalydeco couldn't even do. I've had crackles in my chest since I was a teen. my doctor explained to me that people with crackles have a worse predicted outcome that someone who doesn't. Say a patient with 50% lung function with crackles vs a patient with 40% no crackle, the 40% patients future health is better! Kalydeco cleared my mucus, but with that came severe asthma symptoms (asthma runs in my family). These symptoms took my kalydeco peak FEV (lung function) from 65% to 50% (46% -48% before Ventolin/ depending on the day) after one month on Kalydeco my Fev went up to 55%. After just one month on this amazing new medicine my FEV went up 10%. It cleared the last stubborn plugs of mucus that Kalydeco was having trouble getting to. I have had NO bad side effect at all!!!
There's still a chance to turn this around America, if the CF community rally to petition the FDA/Government to change their mind the final decision for a positive one !!!!!!!!
Bronchitol has:
Relieved my Asthma
No more tight chest
No more wheezing
No more Symbicort (steroid)
No more Ventolin puffers in the day
Helped me breath deeper
Relieved airway inflammation
Cleared stubborn Mucus
Improved my Lung Function
No more Crackles
Please rethink your vote!!!
ZessinA just think its only 0.125c what a shame
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