Columns

Only 61.8 percent of cystic fibrosis patients comply with their daily respiratory medication and 41.2 percent comply with physiotherapy plans, according to a 2008 study. I’ve observed that most patients and their parents want to be perfectly compliant — they just haven’t formed good strategies for…

Cystic fibrosis (CF) is horrible. Say it again for the people in the back: It is horrible. To be transparent, I’m writing this article in a bad mood, so naturally, I look to my diagnosis as a means to understand my frustration. I don’t believe this is unfair…

I’ve always known that I wanted to be a writer. There were some rebel years, of course — short-lived times growing up when I claimed to have aspirations of teacher-hood or superstardom. There was even a year when I wanted to be a hydrologist, as I couldn’t seem…

You’ll meet legions of doctors throughout your life with cystic fibrosis. You’ll encounter doctors you adore and who will save your life countless times. And you’ll encounter some who make life a nightmare. Here are six “characters” you’re bound to meet, plus things they’re likely to say, at…

Dear parent, I know you’re afraid. My parents were afraid, too. My mom left a college biology class crying; the lesson on genetics included the life expectancy of a child with cystic fibrosis. There’s an old home video of her talking to Baby Bradley before I was diagnosed. I was…

I fought cystic fibrosis for 15 years before the overwhelming burden collapsed. My family was driving to get dinner when my brain and heart suddenly exploded. I was sobbing and gasping for breath, able to hear every rapid pound of my heart against my ribs. I couldn’t think,…

Most of last summer was spent either in a hospital bed or lying on my couch — the couch I had watched my cat dying on just months before. I wasn’t in much better condition than my cat. I thought I was defeated, broken. The most activity I had in…

Chronic pulmonary infections are a hallmark of lung disease in patients with cystic fibrosis. Due to the variability in bacteria that can colonize the lung and the specific antibiotic treatments that may be effective, treatment strategies are often tailored to individual patients. But some bacterial infections are…

Many of us with pre-existing conditions have been following the news about the future of healthcare in the United States. It really matters to us. Those of us with cystic fibrosis are heavily reliant on access not only to the best doctors, but also to all of the…

“You should write about how it’s impossible to have a life and be sick at the same time.” This is what my partner said this morning, after asking him what the heck my column should be about this week. Honestly, as a mother of two girls, ages…