Columns

I Work Next to CF Experts, and I Know They Really Care

For nearly three years, I’ve worked alongside brilliant CF doctors, scientists, and PhDs at a great research hospital. Before that, during college, I worked closely with CF scientists and PhDs at the University of Kentucky. All in all, I have about five years of experience in CF science.

Lying Is Good for My Health

I am a liar. OK, not in a bad way. As an actual profession, I am a liar. As a professional dancer, it’s my job to “lie” to the audience in show after show by transforming into an entirely different character.

How We Capitalize on ‘Five Feet Apart’

The CF community’s strength is in its powerful, far-spread voice. For people with a chronic disease, and doubly so when that chronic disease is rare like CF, it is critical for the community to be involved and educated. The CF community is exactly that. When a perfect storm…

The Isolation of Self-employment Is Worse with CF

Loneliness is a killer. It’s perhaps not something those of us with life-limiting physical conditions spend much time thinking about. But the statistics are convincing. In the U.K., women aged 18-24 are at high risk of loneliness. Those suffering from loneliness are more likely…

Let’s Talk About Death and Grief

I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine feelings and thoughts with others. I enjoy talking about sports, engaging in light banter, and dissecting the plots of TV shows — even why “The Bachelor” or “The Bachelorette” made the wrong choice. I’m…

Sleep Tight, CF Community

Life has a way of changing plans and allowing others to help you embrace a new path. Before I sat down to write this column, I went to my favorite coffee shop to get an iced vanilla latte. I enjoy the small moments with my…