When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
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After my daughter’s cystic fibrosis diagnosis, I knew I still wanted more than one child. But, the journey trying to conceive my second child was stressful and emotional.
One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
The excitement we experienced anticipating our daughter, Tegan, starting Trikafta® gave way to sadness and confusion as she experienced emotional side effects.
Bill will jump-start rebuilding of the antibiotics pipeline that is vital to stave off a looming pandemic.
Just like there isn’t always a right (or one) answer to parenting, parenting two kids with CF has shown me that I need to just do the best I can for my family as we navigate my family’s constantly changing needs.
On the brink of being listed for lung transplant, I started Trikafta®, which has helped stabilize my health and helped me avoid it for now, but a transplant could be in my future.
More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
La fibrosis quística (FQ) es una enfermedad genética. Escuche las presentaciones de los expertos, el Doctor Fadel Ruiz, director del centro de fibrosis quística de Baylor y el Doctor Carlos Milla, director del centro de fibrosis quística de Stanford y sus respuestas a las principales preguntas de la comunidad sobre terapias genéticas para la FQ. El panel fue moderado por Sylvia Mazuera, madre de dos hijos, el menor de los cuales tiene FQ.