Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.
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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.
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.
I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.
If you have cystic fibrosis, you have sticky mucus in your digestive system. You need to take enzymes to digest food and medications to stay regular. Doing this will help you grow, maintain your weight, and fight lung infections.