Now that I’m in my 40s and post-lung transplant, I’m beginning to embrace the realities of aging with cystic fibrosis. Despite the gray hairs and deepening wrinkles, I know that I am lucky to be looking forward to mammograms and menopause.
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Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.
I was determined to make my dream of becoming a mother a reality despite the potential risks that pregnancy can cause for people living with CF. It certainly wasn’t easy, but the challenges of pregnancy and CF were rewarding in the end because I now have two wonderful girls who call me mom.
Accepting my son’s cystic fibrosis diagnosis has been a year-long journey for our family. I learned there is more to motherhood with a chronically ill child than meets the eye.
Barisic will transition from current role as Chief Financial and Administrative Officer in January 2023
I grew up learning my dad’s cystic fibrosis treatment routines and helping my mom as another caregiver. My dad may not need as much help anymore post-transplant, but our family’s close bond is stronger than ever.
I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.
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.
With this approval, approximately 2,250 children in the U.S. will be eligible for Trikafta® (elexacaftor/tezacaftor/ivacaftor), including more than 900 who will have access to a CFTR modulator for the first time. The Cystic Fibrosis Foundation believes it is beneficial to start people with cystic fibrosis on modulators as early as possible to help prevent lung damage and the onset of complications.