Cystic fibrosis affects over 30,000 individuals in the United States and 70,000 individuals worldwide. With over 1,800 different mutations, CF is a complex multi-system disease in which the body produces a thick sticky mucus causing a diversity of progressive complications throughout the body. Most people know CF namely because of its impact on the respiratory and digestive systems, but it impacts so much more. What makes cystic fibrosis so difficult to treat and define is not only its multi-organ impact, but that that it manifests itself so differently within each of us diagnosed with the disease. Even individuals sharing the same genetic mutations live vastly different lives and may face different complications or prognosis. Each voice of CF so different and so unique unto every individual.
I admire and respect the remarkable individuals that make up our CF community. I think each of us can agree that we wish such circumstances didn’t exist for us to know one another, but since those are things we cannot change we can be rooted in gratitude that there are amazing individuals with incredible voices to be shared. Today’s post is filled with those voices, particularly those who are on their own Trikafta journey. These are just a handful of stories and experiences reflecting all sides of this journey - each one set to its own unique voice.
While each of our stories may be different, one thing is exactly the same: we fight CF together and for each other so that every single person living with CF has an opportunity at realized hope through life changing opportunities like Trikafta. Everyone’s Trikafta journey is different, just like their life with CF. And for some, Trikafta isn’t a possibility due to their mutations, or for some reason Trikafta is just not a fit for a person’s unique story. It’s important we hear everyone’s story though. From those whose hope is realized within amazing results of a modulator, to those whose hope remains steadfast in future advancements, and everyone in between - everyone’s voice matters. And it’s for all the voices of CF we relentlessly fight for more beautiful tomorrows.
Thanks for compiling these Ashley. You and others that battle CF are doing such a service by communicating your story and experience and the stories and experiences of others.
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