- I've known about this drug for years. I'm guessing almost 7 years ago I started getting emails about it and reading about it when I'd do some CF research on my own. I would skim through the announcements and delete it quickly. I remember thinking this was just the beginning and I was not going to get my hopes up because so many drugs never make it to the final stages of testing and getting FDA approval.
- The drug that is working right now is only for a very small percentage of CFers...4% to be exact. This is a rare mutation and it is one that Andrea does not have. So this drug will not help her.
- I'm afraid that after all the excitement winds down, we'll get hit with something we don't want to hear. I know this is 'the glass is half empty' way of thinking, but it's how I'm feeling at the moment.
- I'm remembering a friend that lost his life to CF 8 years ago and I found out through his widow that he carried the G551D mutation. I feel so sad that this wonder drug didn't come sooner.
Thursday, November 3, 2011
Great news...yet feeling kind of numb!
So yesterday (11-2-11) we–and I mean we as in the entire world–were hit with the news of a new drug that will treat the actual defect of cystic fibrosis persons that carry the G551D mutation.
I immediately found the news clip online and posted it on facebook. I found a couple of news articles and posted it as well.
I posted about how huge this was and wanted to share it with everyone. And then the outpouring posts of support by family and friends came rolling in and I felt nothing. Absolutely nothing. I realized I was posting about it because it was something I should just do. I wasn't even feeling any emotion about it, I just did it. And I've been racking my brain wondering what the hell is wrong with me.
I'm not quite sure what it is but here are some thoughts:
My emotions are starting to surface though. Slowly but surely I'm able to let the tears out and accept the good that all of this is. It took a third article I read today for my eyes to finally weld up with tears and it was a huge relief to let it all out.
Friends have been sharing the news too and that makes me cry. Two of them (that did more than most would ever do) are recalling the day they shaved all their hair off to raise money in honor of Andrea and I'm finally able to bawl recalling those days as well. I mean look at what all the hard work, volunteering, monetary donations have accomplished...GENE THERAPY! And I owe it to everyone that gave and gave tons over the past 10 years.
A friend posted on facebook the following "How do you thank someone for doubling your child's life expectancy?" The answer: I don't know, but I sure as hell will do so for the rest of my life!