There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times in my journey with CF.
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As a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.
Hospital stays are hardly a party. But since they're a part of life with CF, let's get the most out of them and help ourselves make them fewer and farther between.
A few years ago, CF started to take its toll on me. I kept getting sick, going on and off IVs, going in and out of the hospital. But through it all, I found a silver lining.
When I was young, my parents tried to increase the appeal of hospital stays by calling them “sleepovers.” But as I got older, I realized that these two things are, in fact, not the same.
The only thing that is certain in my life is the uncertainty of my teenage daughter's next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.
I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
When my four children were young, it was important for my husband and me to protect their sense of security. We did what we could to reduce their fears about my frequent hospital visits and even make it fun for them at times.
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.