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News from my appointment

Everything at my appointment went fairly smoothly. My PFTs were down, as was my weight. Those were obviously negative aspects of the appointment. However, my doctor and I talked a little bit about CF research, and there is some incredible progress occurring!! As you may know, the FDA just recently approved a new drug to be released to the public that has shown to treat the cause, not the symptoms, of CF in patients with a specific mutation. Here's the link to the CF Foundation website that explains the medicine much better than I can explain it.

Anyway, Kalydeco is now being tested with another drug to help patients with the most common mutation that causes CF, deltaF508. This study is in phase 2 trials. My doctor told me at the appointment that I would qualify to be a study participant in these trials because I have one deltaF508 mutation, am over 17, and have PFTs that re above 40%. This is all SO SO SO exciting!! I would participate in a study like this in a heartbeat. This medicine doesn't just treat my symptoms. It could potentially treat the cause of my CF! Do you realize how exciting this is? I honestly never would have believed you if you had told me that scientists would have the potential to cure my CF in my lifetime if you had told me that a couple of years ago. But here we are, living in 2012, with absolutely incredible scientific discoveries occurring so quickly I can hardly keep up with them. I am praying for a cure, for the medicine to go through the trial studies as quickly as possible, for the FDA to approve the medicines quickly, and, if at all possible, for me to be able to participate in future studies. I'd appreciate it if you'd pray alongside me. We live in an exciting time, my friends!!


  1. Oh Emily!!! I wish you would publish your blog to your Facebook page so that everyone could celebrate this incredibe news with you!!
    I have had you in my daily prayer journals for years and will continue to have you there until you are cured and beyond!
    Your wisdom and faith inspire me constantly!!! -- Thank you for your boldness and your courage.
    Continually praying until CF is in the history books as a former illness that used to affect many!!! Love you precious one!!!


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