g551d mutations on Kalydeco

[bethylove]

FEV1 in Febuary = 2.33 L around 70%
After 19 Days of Kalydeco FEV1=2.63 L around 76.6%

 

[sweetninis]

Can anyone tell how to measure FEV1 and what is mean by it

 

[GrandmomBEV]

Great news. I am pleased he is doing so well I miss seeing you on the oled list . my ERIN (GRD) is having her TX eval this month at Mayo in Jax.FL. best wishes for shorty with this wonder drug...
LOVE & HUGs, GrandmomBEV

 

[Austen742]

Sorry to hijack this thread but i can see there are people on here who are or have children that are taking Kalydeco. Our UK group Quest for Kalydeco are trying to make some headway on getting Ivacaftor approved for funding in the UK. We have been told that the stumbling block to all this (other than the massive price) is there is limited long term data and no evidence that people on Kalydeco use less treatments. Hence not being cost effective. So we are trying to get some personal testimonies to take to present to them at a meeting on Thursday to show this is true. If you can help us with this it would be amazing and we would hugely appreciate it. Plus feel free to email us on patient.interest.group@gmail.com.

We also have a very quick anonymous survey that can be completed to help our cause <img src="i/expressions/face-icon-small-smile.gif" border="0"> http://www.surveymonkey.com/s/RNNC8HN