Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
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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.
The Cystic Fibrosis Foundation supports universal masking in school to protect people with CF and other health conditions against COVID-19.
Encuentra respuestas a preguntas sobre la pandemia del COVID-19 mientras vives con fibrosis quística.
Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.
The Cystic Fibrosis Registry Global Harmonization Group, including the Cystic Fibrosis Foundation, published findings from the first global study on the impact of COVID-19 on children with cystic fibrosis in the Journal of Cystic Fibrosis.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
Because of the COVID-19 outbreak, millions of Americans, including those living with cystic fibrosis and their families, are facing tough decisions around employment. The issue of paid leave and its eligibility is emerging as a top concern for people with CF and working members of their family.
My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.