I had never heard of cystic fibrosis until I received my diagnosis — but learning how to navigate my CF prepared me to advocate for my husband’s medical care and helped me grow as an artist.
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A chance meeting at a CF conference 12 years ago gave me one of the most valuable gifts: my CF Mama friend group. Since then, we’ve invested time in our friendship and supported each other through the laughs and the tears.
Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me.
Hospice care helped my daughter, Desirée, through her final days.
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.
We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
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.
Throughout my life with cystic fibrosis, I have marked many milestones. My most important one yet is holding a full-time job while managing my health.