One of the strangest hospital stays I have ever been through was a time when a care provider accused me of being a drug user. Let the record show that I am NOT a drug user. Let the record show that what follows ended up being an important life lesson for everyone involved. I was...
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So much of how we evaluate success of various medications is based on objective efficacy. Has the patient’s FEV1 improved? What about BMI or sweat chloride? It goes without saying that efficacy is critical when looking at treatment routines and options, but I think one of the major things that’s often lost in evaluating different...
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The 2010’s saw the dawn of the modulators. In a remarkable feat of drug development, four cystic fibrosis-specific medications came to market from the test tube: Kalydeco, Orkambi, Symdeko and Trikafta. (If you want to blow your mind, look at the generic names of the drugs included in the modulators – Ivacaftor, Lumacaftor, Tezacaftor, Elexacaftor...
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I have spent about six months in Hanover, and one of the things I was encouraged to do upon setting off on this new life journey is periodically reflect on the experience. My transition into full-time student mode has been both a challenge and fantastically liberating. The biggest hurdle of them all has been losing...
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In October I gave a community wide talk about cystic fibrosis at Tuck where I mentioned Lea and her impact on not only my life, but also the cystic fibrosis community. I had been at school a mere two and a half months at that point, and I can tell you that I don’t think...
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I never had asthma until a year and a half ago. One night, Gunnar and I were getting ready to go to bed in his bedroom back home in Long Island, like we had for years. Out of nowhere, my throat and chest started to feel very tight. “Oh no…” I thought, “I’m coming down...
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Trikafta’s amazing power is…well… amazing, and even more so for children living with cystic fibrosis. Our hope is that when children can start dosing Trikafta, they will be putting off disease progression for decades. That goal is seemingly becoming a reality before our eyes. The cystic fibrosis that I, along with much our adult community,...
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