Blog

After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.

My life was turned upside down when I was diagnosed with cystic fibrosis caused by a rare mutation, but my passion for figure skating has helped me stay healthy and happy through it all.

As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.

I was determined to finish school and set a good example for my children. Along the way, I learned how important it is to have a strong support system to help manage the challenges that can come with cystic fibrosis while I pursue my dreams.

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.