No one can live this life for us. It’s ours to live. But, whether it’s amidst the loneliest and most difficult of times or the most vibrant and beautiful moments of our lives, we are never alone. We are beautifully composed of the fingerprints left on our lives by every person that has rippled across our existence. They are what silently hold us up as we feel we are about to fall, and they are the contented beauty we see reflected in ourselves in moments of pure joy and elation. Each of those unique fingerprints unknowingly inspiring every breath of our life.
Even down to these faulty cells, my life has been transformed by the fingerprints of the people who have touched my life directly and indirectly. I can’t help but wake up each morning grateful for the people who have poured themselves into my life and have shaped me into the person I am today. I only hope that within this gifted life I get to live that I wholly reflect all of the goodness that each of those fingerprints has placed upon my life. Most of all, I hope my own fingerprint silently leaves a positive and meaningful impact on those whose lives I am lucky enough to know.
Living with CF can be a lonely place to exist, but it’s because of these genes that my life is filled with some of the most incredible and influential fingerprints. Some in which I have not, nor ever will be able to meet face-to-face in real life. But, it’s our very fingerprints that connect us to one another in a way only possible because we share a life of diagnosed circumstance called cystic fibrosis. Each fingerprint of CF is unique unto its person, but is laden with the same saltiness due to CF - causing us to leave a lightly salted outline of our fingerprint on everything we touch. It’s those very fingerprints that remind me that I’m not alone in this life and give me strength to find the beauty in every breath.
The drug Trikafta aims to correct the underlying cause of cystic fibrosis at the cellular level. It influences the faulty CFTR protein that causes the body to produce an imbalance of chloride which leads to the complications that are manifested within cystic fibrosis. The chloride imbalance is what causes those with cystic fibrosis to sweat excess amounts of salt and is what makes our fingerprints extra salty. Trikafta aims to restore that chloride imbalance to a more normal level which, in hope, allows our bodies to slow the progression and damage caused by excess mucus caused by CF.
But what happens when that fingerprint changes? That I no longer leave the same salty print I did just weeks ago? That I no longer can find my glass in a crowded room because I no longer can see my salty fingerprints scattered like an abstract frost along its sides? Seen or unseen, it’s those very fingerprints that will forever connect me to a most beautiful community of individuals whom will continue to inspire every breath that I am given. It’s that unbreakable connection with this incredible community that inspires me to give voice to CF, and fight even harder for a day when every person with CF has the chance to live within realized hope born of a life-changing opportunity like Trikafta.
I think that’s the hardest part of this journey for me. It’s holding those pills in my hand and thinking of the amazing community of individuals with CF that have touched my life in such an impactful way, and how so many of them aren’t eligible for this priceless gift of hope just because of there genetics, or that they are being actively denied the opportunity I simply hold between my fingers. And it’s those very fingerprints that lay heavy on my heart and send tears streaming down my face. I can’t help but look at my hands and not see the 70,000 other individuals with CF and the hope they each wish to hold within their own hands. CF is a part of each of our lives and no one can go through this journey for us. But, we certainly are not alone in it - nor will we ever be. It’s those salty fingerprints that inspire each of us to fight even harder for one another, for a day when we all can hold such hope within our hands.
While Trikafta gives great opportunity to individuals with at least one copy of the Fdel508 mutation, that still leaves over 10% of individuals with cystic fibrosis that do not have such a life-changing treatment opportunity. Within such a life-changing treatment are thousands of fingerprints, including yours. It’s those very fingerprints that give us life and fight everyday to give us a chance at another beautiful breath. For that, I and so many are grateful beyond words, but I ask you to continue to help us in this fight until it’s done. For everyone. Love to you all.
*If you feel it in your heart and want to leave your fingerprint I ask you to support the Cystic Fibrosis Foundation by sharing your voice, giving a donation, or participating in one of their incredible events. Visit their website to find out more and learn how research and development of new drugs is giving us all a chance at more beautiful tomorrows with those we love. Visit www.cff.org
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