Because so much rides on them, the pulmonary function tests (PFT) -- that are a part of every cystic fibrosis care center visit -- fill me with anxiety.
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Although I am very involved in my son's cystic fibrosis care, I have learned to rely on the insight and expertise of his care team when mine isn't enough.
Here's how being open and honest about all my symptoms, cystic fibrosis-related or not, with my health care providers has improved my overall health care.
As a mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.
When it comes to my cystic fibrosis care team, I've learned that it's often the little moments that matter most.
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.
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.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.