VERBOSE DESCRIPTION OF MY SOPHISTICATED FEELINGS
WISDOM BEYOND MY YEARS?
Some would consider it unwise to be a first round “tester” of a drug that stems from an inchoate scientific field that is increasingly comprised of overly confident 20 something’s who are simply excited to be let loose with CRISPR. I, using my highly refined powers of reason, immediately accepted at the opportunity to try something that could seriously effect the way my body functions without a hint of hesitation. Looking forward, I hope that this drug works like it’s supposed to with my rare mutation (only 3 people in the US have my mutation… And one of them is my brother). Overall, this drug is empowering as it makes me feel as adventurous as Christopher Columbus without even having to leave the couch. I will, however, regrettably have to venture all the way to the uncharted territory of my refrigerator, as this drug must be taken with food.
HOW DO MY CELLS FEEL ABOUT CFTR PROTEIN MODULATORS?
They’re not salty about it. <– if you get this joke you are either a hardcore CF expert, or you paid wayyyyy to much attention in biology.
WHAT I’VE LEARNED IN WRITING THIS POST
I’m so SOPHISTICATED that I didn’t even know how to spell SOPHISTICATED.
WHAT IS THIS BLOG ABOUT?
Follow me on my journey as I document my experience as one of the first wave participants of a new, protein modulator Cystic Fibrosis drug called Trikafta. While I like to think of myself as a member of the X Men squad because I’m a genetic mutant, unfortunately my genetic mutation only gives me extra sticky mucus that results in my disease #superSnot. Protein modulators like Trikafta are supposed to help “fix” that sticky mucus.
WHAT DOES THIS CFTR PROTEIN MODULATING DRUG DO?
This drug should help me to grow a set of lungs in my legs. Just kidding, it isn’t that cool–This drug only changes cells throughout the body so they can transfer sodium chloride in and out of cell membranes appropriately. #nerdin
WHY MIGHT THIS BLOG BE INTERESTING?
I might die. In fact, I guarantee that I will die at some point. Will I die while writing this blog or because of this drug? Highly unlikely. Aside from that, the only thing that will make this blog interesting is me. Unfortunately, this second draw has nothing to do with my personality but likely stems from my uniqueness by virtue of me trying Trikafta. #reality Now that it has been established that the drug is the only thing that’s cool about this blog, let me hype it up: almost nobody is has taken this drug, it has only been FDA approved since October 2019, it is one of humanity’s first attempts at genetic personalized medicine, and it is only even potentially available to less than 0.06% of the U.S. population. As such, there may be exciting things to describe that you won’t find on the FDA website. Also, due to the individual nature of genes, the sensations people have on this drug are completely unique. In short, this blog may be readable because it is more likely that you’re recovering from a shark attack than that that you’re taking a gene modulator. #scarcityprinciple
RULES BEFORE READING MY BLOG
1) The following sensations that I write about are not “side effects” of protein modulators like Trikafta. If you want real information on side effects, seek published info from Vertex Pharmaceuticals 2) I’ve been simultaneously suffering with a series of neurological issues in addition to my CF (cystic fibrosis), and as such, the content that write is ONLY RELEVANT TO MY EXPERIENCE. 3) I like to infuse humor into my writing, so don’t take me too seriously. With that being said, I’m not “making stuff up” for the sake of entertainment–this is simply a representation of my experience When in doubt, see the all caps portion of part 2.