@dannyledwith21 ya! my lung function has improved, i'm not coughing as much, i just feel better overall, and i've gained like 6 or 7 pounds. all in a month!
@dannyledwith21 great new!! it was approved finally...Im glad its working for you..I need some blood work to see if I have the g551d I think I do, I have talked to my CF doctor about the drug b4 it was approved and he didnt say I dont have the mutation..I have a blood test next week..stay healthy man..a little easier now
what will determine the curative as opposed to palliative properties of these drugs will be the age at which people start taking them. The earlier, the better. This is just the beginning, to all CF sufferers out there, medical sciences are accelerating. This is excellent news.
My bestfriend has CF... it is soo scary to see her that way. I was at her house once and she had a coughing fit and her older sister came rushing in and put her on oxygen and a breathing treatment. I knew nothing about this until she showed me your videos. Thank you soooo much!!! Now with a little training I can help her (:
I think what you're doing is very inspirational to those with CF and educational to those without CF. I hope you're doing well and continue to do so! :)
Hey, just got back from the CF convention in Anaheim, CA. Talked to the people at the vertex booth(trying to get my son early access but his FEV1 is too high-65%. Anyway, they said there is nothing they can do to release the drug early but should be in spring of 2012. I think there are only 5 patients in the Atlanta area that are G551d and my son is one of them. Hang in there and I'll post updates when we get med.
just got approved today! I have the the G551D mutation and I'm currently part of a VX 770 study being held in Virginia. I also have the Delta F508.
12Judah 1 month ago
@12Judah yes great news! you notice any improvements?
dannyledwith21 1 month ago
@dannyledwith21 ya! my lung function has improved, i'm not coughing as much, i just feel better overall, and i've gained like 6 or 7 pounds. all in a month!
12Judah 1 month ago
@dannyledwith21 great new!! it was approved finally...Im glad its working for you..I need some blood work to see if I have the g551d I think I do, I have talked to my CF doctor about the drug b4 it was approved and he didnt say I dont have the mutation..I have a blood test next week..stay healthy man..a little easier now
deerodd07 1 week ago
what will determine the curative as opposed to palliative properties of these drugs will be the age at which people start taking them. The earlier, the better. This is just the beginning, to all CF sufferers out there, medical sciences are accelerating. This is excellent news.
CHEESYhairyGASH 1 month ago
My bestfriend has CF... it is soo scary to see her that way. I was at her house once and she had a coughing fit and her older sister came rushing in and put her on oxygen and a breathing treatment. I knew nothing about this until she showed me your videos. Thank you soooo much!!! Now with a little training I can help her (:
Stay strong!!
jdogwhisper19 2 months ago
I think what you're doing is very inspirational to those with CF and educational to those without CF. I hope you're doing well and continue to do so! :)
WahooRN 2 months ago
Hey, just got back from the CF convention in Anaheim, CA. Talked to the people at the vertex booth(trying to get my son early access but his FEV1 is too high-65%. Anyway, they said there is nothing they can do to release the drug early but should be in spring of 2012. I think there are only 5 patients in the Atlanta area that are G551d and my son is one of them. Hang in there and I'll post updates when we get med.
djbowler3333 4 months ago
Hi man, Fellow CF er here, how are you?
I've read the news today! its awesome! hope the best.
Cheers!
SSiEAX 4 months ago