Tré is a 27-year-old living with cystic fibrosis in Pensacola, Florida who works as a research lead for BioNews Insights. He is an extremely passionate advocate for disabled rights and people living with chronic disease, especially cystic fibrosis. His sister, Alyssa, died at 29 due to chronic rejection of her bilateral lung transplant, pushing him further into the fight for a better world for all. “Mutations & Conversations” discusses the science and sociology that binds us all. He also loves his golden retriever, Duncan, very much.First in a series. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver this month included many interesting branches of the wonderful world of CF research. In this column, I’ll share a short overview of an interesting poster from each topic to showcase promising developments.
As much as we resist the idea, cystic fibrosis can become a defining part of identity; a lifestyle that we’re forced without choice to live day in and day out. A choice exists, I presume; we have the choice to take care of ourselves, to take our medications, to do our…
If you read my column last week, you know I care a lot about the interpretation of words. The word “cure” holds tremendous gravity in the cystic fibrosis community and for scientists. It’s the Holy Grail of CF science and what we ultimately work toward. CF is a progressive…
Speaking as a writer: Words wield heavy power. Our written and spoken words are capable of mightiness. They can impart life-changing wisdom or inflict pain, whether intentionally or unintentionally. I feel I must be transparent about life with cystic fibrosis so that I can use my experiences to share learned…
I’ve noticed that there are two schools of thought in the CF community about discussing our life with a chronic disease. The first: If we expect others to be considerate and respectful of our circumstances, we must educate them about the intricacies of life with CF. The other: It’s not…
A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings. The many aspects of routine CF care — preparing medications for the week, reconstituting antibiotics, Vest treatments, sterilizing nebulizers, IV antibiotic administration,…
“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence in a Facebook update when we learned that no options remained for her chronic rejection after a second lung transplant.
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