Columns

It’s been almost three years since a port-a-cath infection nearly killed me. A fungal infection invaded my bloodstream and attempted murder, shutting down my organs and blasting me into a dimension of hallucination and suffering for days. When I awoke, I was a terrified, caged animal. I awoke to…

Most clinical manifestations of cystic fibrosis (CF) are in the lungs, pancreas, gastrointestinal tract, and sometimes the sinuses, kidneys, and liver. Unsurprisingly, these concerns attract most of the attention. And CF’s main clinical manifestations should warrant most of the focus. But it’s crucial that we don’t forget the “less serious”…

Cystic fibrosis is, for the most part, considered an invisible illness. Shortness of breath isn’t visible. Pain in our joints and the discomfort of digestive issues may show on our faces, but those symptoms aren’t represented by the aids and devices typically associated with disability or disease.

This time last week, aided by copious amounts of coffee, I was putting the finishing touches on a presentation I would deliver the next day in Berlin. I was speaking at the Medical Affairs Summit, an annual gathering of medical affairs…

Have you ever been caught up in a heated discussion with someone who continually refers to stories that confirm their beliefs? Or had a conversation in which it seemed as if the other person had read only the research that confirmed their side and had no reasonable counterarguments to your…

“If we had a little girl together, that’s what she’d look like.” He said this to me recently while eating ice cream sundaes with our girls. I slowly turned, a knot in my stomach, scared to look. As I glanced at the little girl in the corner (enjoying time with…

“Bill! Bill! Bill! Bill! Bill!” Many millennials immediately recognize the iconic jingle that was the introduction to the educational (and entertaining!) children’s science show “Bill Nye: The Science Guy.” Bill Nye was the only nonacademic exposure to science that some American kids enjoyed. At least, it wasn’t academic…

Everyone with cystic fibrosis knows that feeling. Sometimes, it creeps up on you slowly. Other times, it hits right away, like a truck speeding down the wrong side of the highway. That feeling is, of course, caused by side effects from antibiotics. As I sit here, going…

Disclosure. What a heavy word. While most people have some aspect of their lives hidden from view — or perhaps kept secret — for someone with cystic fibrosis (CF), disclosure can be a particularly anxiety-inducing word. I believe that CF should never…

I was fully deaf, too weak to walk across my living room (I couldn’t reach my upstairs bedroom anymore), constantly coughing and vomiting, soaked in sweat and wheezing, too anxious to face friends, under my parents’ 24/7 supervision, without a job other than occasional editing for a local magazine,…