My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
Site Search
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
When my wife and I learned that our son, Benny, has cystic fibrosis, we were concerned about how we would fit his treatments and care into our daily lives. We are grateful to have not needed to make many major changes like we anticipated, thanks to having a village around us and finding ways to make treatment time more fun.
Medicaid beneficiaries are encouraged to update their information with Medicaid to ensure continued coverage.
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.
The Cystic Fibrosis Foundation is providing additional funds to TB Alliance to advance the development of a compound that could be used to treat infections caused by nontuberculous mycobacteria.
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.
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.
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.