“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…
Mutations & Conversations - a Column by Tré LaRosa
My depression and anxiety went undiagnosed and untreated for years. I knew something wasn’t right, but I didn’t think it was “bad enough” for me to be officially diagnosed with depression or anxiety. My life wasn’t “bad” — my health was fine, and I was a good student…
Three years ago, I was hardly involved in the broad cystic fibrosis (CF) community. My only involvement with CF – aside from the fact that my sister and I have it – was some undergraduate research in a CF lab and taking part in Great Strides walks over the…
When we say “me” or “I,” what exactly are we referring to? Are we referring to our bodies, our minds, or the combination of the two? It’s both a scientific and philosophical question, who we are. In a casual manner, we often speak in the first person when referring to…
I can remember the day I discovered the truth that I had already suspected in my heart: cystic fibrosis (CF) is a life-shortening disease. I’m just old enough that I couldn’t Google whatever I wanted to at the time. I learned this information from a calendar sitting in my CF…
Based on the stringent qualifications the Cystic Fibrosis Foundation uses to determine who has cystic fibrosis, approximately 70,000 people currently have CF worldwide. That includes 30,000-35,000 in the United States. In this broad population, many subpopulations fit neatly into the CFF’s qualifications. Others do not. As much as we…
I have a productivity complex: I feel like if I’m not being productive, I’m wasting my time. And yet, whenever I accomplish something, I don’t bask in the enjoyment of accomplishing that thing. Instead, I’m worried about the next thing I need to accomplish. The to-do list of…
We all play different roles in our lives: We are friends, children, siblings, parents, cousins, employees, and more. In each of these roles, we assume the jargon of that role when we talk in those environments. In our workplaces, we may use the scientific, technical, or specific jargon…
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.
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…
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