Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.
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I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.
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.
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.
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.
For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.