Seeing cystic fibrosis portrayed in film and on TV is a mixed bag, and often my disease is overly dramatized to get more views. But I still think there’s value in making people more aware of CF.
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When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community.
As a black man with cystic fibrosis, I am in a minority group within a minority group. I waited my whole life to find someone I could easily relate to until I happened upon a Facebook group for post-transplant patients.
My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.
As someone who is in the hospital three to four times a year, I've found that there are a few things I need to create a comfortable environment. I love to look online and see what other people with CF bring to the hospital, so hopefully, my list will give you a few ideas for your next stay.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.
Spending so much of my childhood in and out of the hospital and doing CF treatments was already enough to deal with, so it felt easier to keep my mental health challenges hidden. However, speaking up about my feelings helped me learn that caring for my mental health is as important as taking care of my physical health.
I had a number of professional aspirations while growing up, but cystic fibrosis caused me to play it safe. Looking back, I wonder how my life would have been different if I didn’t let CF limit me.
I have always been very interested in science, eventually leading to my career as a genomic scientist. My curiosity helped me cope with the uncertainties of cystic fibrosis, leading me to many academic, professional, and personal opportunities that gave me a more expansive view of how my different roles and identities can build upon one another.
After traveling to over 20 countries, I’ve learned that cystic fibrosis doesn’t have to hold me back from experiencing life abroad. Here are some tips for traveling with CF.