Blog

Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.

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.

I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.

Researchers from the University of Pittsburgh wanted to better understand the realities of parenting as a person with cystic fibrosis, so they collected firsthand accounts from members of the CF community.

At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon. 

My voice plays an important role in managing my cystic fibrosis. Breathing techniques that I have learned as a singer help me perform pulmonary function tests and my voice can signal a change in my health — if I listen to it.