2019 has given me much to reflect upon, including which of my columns are my favorites from the year. My chosen columns convey what I set out to do when I began writing “Mutations & Conversations” some 16 months ago. I hoped to push the envelope and encourage conversation in two ways: To educate people about important scientific issues and discuss potentially controversial sociological matters that influence our community.
These columns are the ones I’m most proud of and that exemplify the mission of my writing. Following are the columns, unranked and in chronological order, with a summary on how each column came to be.
This June will mark four years that I’ve worked in a cystic fibrosis lab focusing on personalized medicine and rare mutations. During that time, I’ve learned about the wild variations of CF. While I knew of the vast variations when I started in the lab, that lesson is reaffirmed for me every single day. As I’ve found out more about the Cystic Fibrosis Foundation’s qualifications for CF diagnoses and global CF care, something occurred to me: people around the world are living with undiagnosed CF and therefore don’t receive proper medical care. I thought it would be important to educate the American CF community about these populations and send a message that if we are truly concerned about everybody with CF, we should mean everybody with CF.
Climate change is often considered a “political” issue and many people avoid discussing it so they don’t “get their hands dirty.” However, climate change is “political” in the same way healthcare is political; they both affect all of us, and the only people privileged enough to call them apolitical are those who will be harmed the least by their effects. I wanted to convey the importance of awareness that climate change — widely accepted in scientific communities — is already harming our community. If we choose to ignore this critical issue, we’re doing a disservice to our community. I think we can be optimistic, but we first have to be aware.
I’ve received plenty of compliments about how I remain optimistic even though I have a chronic illness. More often than not, I lightly chuckle at the implication that those of us with chronic illness should be sad and depressed all the time. It’s true, though, that chronic illness presents more challenges than most people are familiar with. I was inspired to write this column because most people are more resilient than they know. I felt that if I wrote about the resiliency I’ve found in myself, it might help others to recognize their own strengths.
Back in September, I was asked to speak at an event organized by the CF Foundation. During my visit, they asked if I’d like to go to Capitol Hill to advocate on behalf of the CF community. It was the most concrete “advocacy” I’ve done — I was influencing bills that the lawmakers would sign. It was one of the coolest days of my life, and I’m deeply proud of the work we did. We must encourage others to do this too.
Similar to the columns on climate change and the worldwide CF community, this one acknowledged that more things unite us than divide us. CF is usually considered a Caucasian disease, but we have reason to suspect it cuts through every human grouping — we already know of many other races beyond Caucasians that are affected by CF. We can’t forget any group of people that CF affects, especially if we claim we’re trying to make the world a better place for all people with CF.
2019 was a great year. I’m so proud of this column. Thanks for reading. Please let me know of any topics you’d like me to write about.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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