I’m frustrated. Don’t get me wrong, Vertex has come so far in its development of Kalydeco and in its research for new drugs to target all mutations of CF. And, don’t get me wrong, there is so much promise out there, and so much discovery and incredible things happening every day with these new drugs, but I learned something yesterday that disheartened me a bit.
Now, I’m not one to be negative, as most people know, but I was truly upset about this, and I think sometimes its important to recognize when negative thoughts creep up. It’s important to let yourself feel down sometimes, because if you didn’t, you’d go crazy. For me, once I’m able to be honest with myself about what I’m feeling, I’m able to learn something from it and turn it into a positive, or at least make it something that isn’t going to ruin my day.
I was reading this amazing woman’s blog (http://luckycfmom.blogspot.com/2012/02/genetic-origami.html) who is a chemist and also happens to have a kid with CF who is blessed to have the mutation for Kalydeco. Her blog is super informative and motivational, and she really helps to put things into perspective, explain what is really going on, and give all of us others with CF hope. But I like thats she’s honest too. I learned from her blog that although there is great promise with the current drugs out there, there is also a new set of drugs that works to correct another piece of the DF508 mutation that still will take years to pass… and this is the drug that will work best, (how I understood is that it would potentially work as well as Kalydeco is working, where the drugs being researched now will improve the CFTR function, but not as much as these new drugs). The expected market release for such a drug is 2020.
After hearing about Kalydeco, I immediately saw a majority of CFers being “cured” or at least significantly treated in the directly foreseeable future. Like, 2 years tops. I was ecstatic, even allowing myself to think…. well this is tough now, but we just gotta stick it out for a few more years and then we won’t have to worry about the harsh realities of CF. But after reading about the true nature of the difficulty of correcting the DF508 mutation, I’m beginning to realize that, while there is still hope, realistically it isn’t going to be easy, and it isn’t going to be soon. In 2020, I’ll be 30 years old. That seems unfathomable right now, and that news just kind of set me back a bit.
Last night, I was upset. I couldn’t sleep because I was thinking about how unfair it is that while I think I will probably make it til I’m 30 to see the passage of this drug, that isn’t the case for SO many CFers right now, who don’t have time to wait 8 years… or even 2. And that so much can change in 8 years with our bodies. Its scary. Its frustrating. Yet, there’s no one to blame here. Researchers are doing everything they can, CFers are willingly getting involved in these trials, the CF foundation is raising millions of dollars. The only thing to blame is CF. It always comes down to blaming CF. I just kept thinking “Man, I really hate CF.”
Once I was able to sleep on it though, I was able to wake up with a new perspective. I’ve never been one to dwell on something that is out of my control (at least not for long). And although, finally, it felt like CF was going to be under control with these new medications…. there’s nothing I can do about the fact that these drugs need to be tested and approved first, even if that does take years. Whenever I face something upsetting like this I usually come to the same conclusion: there’s no use worrying about the future when I have the gift of good health and happiness today. Even though I won’t ever say that I think its fair for CF to be the disgusting disease that it is, or that its fair that so many people will die before the drug is released… there is no use in complaining. Instead, we, as a community, must keep on fighting to get these drugs through the trials, to raise enough money for them to be researched, and to do what we can to keep ourselves healthy in the mean time.
Today I went on a 6 mile run, and the entire time my motivation was one of fighting back. I was telling CF that even if it takes 8 years… I’m not giving up. I’m keeping my lungs as strong as my will to fight. No matter how much I hate CF, no matter how much I hate the complexity of those stupid little CFTR proteins, I won’t let that get in the way of my hope, my health, and my happiness.
