I’m a patient with CF and was diagnosed relatively late at nine years old. For the most part, I was a healthy kid and gained weight with ease. It wasn’t until I was about eight that I started developing a pneumonia that never really went away. I spent much of 8-9 years old really sick, and surprisingly was never admitted. Finally a radiologist looked at my x-ray and I distinctly remember him coming to talk to my my parents and that’s when I first heard the words Cystic Fibrosis.
I was tested shortly after and sure enough I had CF. As I was nine year old, I don’t remember much. But what I remember are two things:
1. Sitting in the car listening to Destiny’s Child’s “Survivor” and asking my mom if I was a Survivor. And, she promptly told me no. That, that was more for people who had gone through cancer or serious life diseases. I still kinda agree with her. But, that’s a topic for another day
2.I remember my parents taking us (my brothers and I) to Mexico that summer, as I had been healing and doing better. And I remember having questions about what CF meant for my life as a future, and I remember my mom saying I was capable of doing anything I wanted.
Looking back on that, I didn’t realize how profound of a statement that was for a Mom who’s child was recently diagnosed with what was called a terminal illness. Or to feel bold enough to say, no, you’re not a survivor: this disease hasn’t gotten to you.
What do you remember from your diagnosis, or your first memories of CF being a thing in your life.
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