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Growing up, I was insulated from the wider cystic fibrosis (CF) community. Since I had a sibling with CF, I didn’t feel the need to meet other kids with CF. My sister Alyssa and I had an amazing bond in which CF was a part of our lives. It allowed…

Three weeks ago, I gave a guest lecture to the MBA class at the University of Cambridge. The next day, I traveled to Liverpool and appeared onstage with my former cystic fibrosis (CF) consultant at the Cystic Fibrosis Trust Europe Community Afternoon.

A truth binds the lives of two women who have never met. One sees into the other’s soul through her writing — for both women, cystic fibrosis (CF) has been their greatest blessing and most dreadful curse. Reading Mallory Smith’s posthumous memoir, “Salt in My Soul: An…

This is going to feel like something you’ve read before. It’s going to say things like, “Don’t assume just because someone is thin they want to be this weight,” and, “It’s so hard being judged for something you can’t control.” All that is true. I have read the skinny-sick posts,…

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…