Kalydeco is a new drug that has finally been funded for 4% of CF sufferers in England with the G551D gene mutation. It's the first of it's kind, it should improve lung function, clear all the mucus out of lungs and sinus etc and generally improve quality and length of life. However, this is not a cure. But it IS something that should prolong life expectancy and with this we may be able to find help for other gene mutations.
I have the G551D gene (yay!) I have just started on Kalydeco so keep up with my blog & see how I get on :)
Hi, Grace. I have 2 CFers, one on the Kalydeco trial, and one waiting for it to be available. I wish the government would see how important this little blue pill is, and get on and FUND IT! Well done, you, for blogging your journey. I look forward to reading more about your journey from over here in Australia.
ReplyDeleteKeep up the good health!
Ruth
Wow all the way from Australia! Hopefully we'll get the awareness we need and it will be funded in the early future! You'll have to update me on how your CFers are doing on the trial!
DeleteThank you :) Grace
Hi Grace, I have been reading your blog for a while now and wanted to tell you that its great to read your stories and everyday life. As a fellow sufferer i can relate to what you share and this reminds me that i'm not the only one out there. Thank you for doing what you do and i hope you are well.
ReplyDeleteEllie