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By the time my late daughter, Jasmine, had turned 11, we’d become professionals at handling cystic fibrosis (CF). In those years, our lives revolved around a schedule that most people couldn’t imagine. CF is a genetic disease that causes the mucus in the body to become thick and sticky,…

Living with cystic fibrosis (CF) means becoming an expert in your own body. You learn the rhythms of your lungs and the early warnings of an exacerbation. You notice the subtle signs that something is shifting. Even after a lifetime of navigating CF, a double-lung transplant taught me something…

“Can you help me?” It seems like a simple request, but it’s not so easy for me to say those words. I feel guilty asking for help and ashamed that I need assistance. Living with cystic fibrosis can make me feel like a burden because of my health…

Sometimes a story finds you and simply won’t let go. That’s what happened when I came across More Mornings 4 Mexico on social media. This program in Mexico City for children and young adults with cystic fibrosis (CF) is producing results I found hard to believe at first. It’s…

I’ve been anxious since the removal of my beloved port-a-cath. Living with cystic fibrosis has frequently necessitated the use of intravenous antibiotics. A few years prior to my double-lung transplant in 2017, I needed IVs every few weeks. But my veins grew tired, so I had a…

My husband, Chris, and I celebrated two years of marriage on May 25, but it feels like we’ve been together longer, given all that we’ve been through this year, which saw way more sickness than health. As I reflect on the past year, I’m so grateful for my husband, who…

Fifty years ago, a cystic fibrosis (CF) diagnosis meant something very specific: a short life, mostly counted in hospital stays and loss. Parents received the diagnosis and were quietly told not to plan far ahead. There was no genetic map, no targeted therapy, and no database of mutations. Back…

I recently underwent surgery to clear up a sinus infection. Even though I had a double-lung transplant eight years ago, cystic fibrosis (CF) still often results in thick, sticky mucus clogging up my sinuses and becoming a breeding ground for germs. I’ve lost track of how many sinus…

When my late daughter, Jasmine, was diagnosed with cystic fibrosis in 1994, we had appointments to remember, medications to track, and other treatments that seemed to eat up every spare moment. I remember sitting at the kitchen table surrounded by prescription bottles and sticky notes, wondering how I would…

Cystic fibrosis (CF) can manifest in countless ways, and no two experiences look exactly the same. For me, one of the most disruptive symptoms isn’t something that shows up on a pulmonary function test. It’s anxiety. I’ve had respiratory infections and enough IV antibiotics for a…