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. While it probably seems like the biggest benefit of these positions is the hard knowledge I’ve obtained — how CFTR works, trends with modulators, the past and future of CF medicine, and much, much more — the way of thinking and insights I’ve gathered from these colleagues have been just as or more important to me.

Scientists and doctors are people, just like us

In my current position, I work closely with CF clinicians who double as research PIs (Principal Investigator, though I always want to say private investigator) that lead our lab. It would probably take me a series of pieces to delve into the organizational map about doctors, scientists, and more, but the take-home point is that some doctors spend the majority of their time seeing patients and some spend more time on research. Each institution and department has different standards.

It’s particularly cool to hear doctors in the lab talk about CF in such a clinical and scientific manner. It has helped reduce the romantic notion of CF. I no longer feel as personally victimized as I used to, and I definitely don’t think of CF as anything much different from those clinical and scientific ways.

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I can’t stress this next point enough: They are people. And I don’t mean it in the same way as superstar athletes or worldwide celebrities; I mean they worry and stress about their patients, and they don’t have all the answers. The patient-doctor relationship can feel authoritative at times because they are the clinical experts and we are the real-life experts. Once we break down that professional boundary, our relationships become more humane and collaborative. It took doctors being my colleagues for me to realize that.

Most do not have a personal connection to CF

When I first started working in the lab, I was shocked that I was the first real-life person with CF my colleagues knew outside of a clinical manner. I was their first colleague and their first friend with CF. That’s a really cool feeling.

It’s shocking to think about. There are thousands of people researching CF and tens of thousands of people with CF in the U.S. There are possibly more people researching the disease than those who actually have it. I work with people who want to see me and the rest of the community live a long time.

CF is a fascinating disease, with a community that is intensely grateful and patient advocacy organizations (CF News Today included) that are prominent and involved, which means scientists are drawn to it. We also have brilliant scientists and doctors who often know nobody in their personal lives with CF, yet work to make our lives better. That’s pretty cool.

And it leads me to the next point.

They care deeply about our community

They really, really care about us. They worry about our lives and keep up to date with all the upcoming research. A lot of them read and subscribe to sites like CF News Today, CF Roundtable, or the CF Foundation blog.

These doctors and scientists are angry when proposed healthcare initiatives disregard our humanity and make our lives more difficult. They are angry when politics interfere with scientific progress and therefore hinder the progress that could benefit the CF community.

Most of these doctors and scientists are “healthy” people who have dedicated their lives studying a rare disease. I fully believe that if they didn’t care deeply about our community, most of them would have switched routes long ago.

The CF community is one that includes these scientists and doctors. We should welcome them with open arms. They care about us and will be right alongside us until CF is a thing of the past.

Follow along with Tré’s other writings on his humbly named site, www.trelarosa.com.

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