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KALYIDECO-
- Thread starter Vampy
- Start date
M
marcijo
Guest
If you have access to it (which you should, since you have a G551D gene, I would get in it ASAP! It really is an amazing drug!
I second what Marci said!! Abby has been on it for 19 days now and I am trying to be very skeptical but her PFT's are looking great, and she has not had a cough or sinus drainage which is huge for her!! We go in for sweat test next week. Good luck to you!! And I hope you are able to get on it ASAP!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Aboveallislove
Super Moderator
Did you find out your second mutation yet? If so, that might help b/c of the folks who are taking off-label. (I believe you said in an earlier post they deteremined you don't have 551??)
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
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