There are a number of celebrities who have been diagnosed with cystic fibrosis (CF), some of whom have shone a spotlight on the disease during their career, using traditional and social media, literature, and other channels to raise awareness. CF is a genetic and chronic disease that affects…
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Hi, I’m Luisa Palazola, the Cystic Fibrosis News community manager. This week for Family Friday we spoke to sisters Polina and Nellie Bykova. Polina is 20 years old and has cystic fibrosis (CF). Nellie is 19 years old and doesn’t have CF. Our conversation covered immigrant experiences, hospitalizations, family…
The cystic fibrosis (CF) journey necessitates numerous partnerships, and while a medical partnership is one of the most constructive, family support systems hold immeasurable power. This post launches the series Family Friday, which spotlights support persons. We start with a conversation between Cystic Fibrosis News Today community manager Luisa…
For the first part of this series, I interviewed two women from two different countries in Latin America. Regina RodrÃguez is 18 and from Mexico City, Mexico. Miriam Figueira, from Rio de Janeiro, Brazil, is a 30-year-old doing post-doctoral CF research at The University of North Carolina, Chapel Hill.
Dating can feel like a wasteland of hookups, insincerity, miscommunication, and ghosting. It’s sometimes this vicious, disingenuous place where something as delicate and personal as cystic fibrosis doesn’t quite fit in. After a slew of terrible dating experiences and an awful boyfriend, I had a moment where I decided that I wasn’t…
Earlier this week, I asked the community via Instagram when their first sweat test for diagnosis was. The array of answers made me realize how widely our cystic fibrosis diagnosis stories vary. CF sometimes can present itself in ways that make diagnosis as an infant obvious, or a family…
For many of us, being a part of the cystic fibrosis community is obligatory. No matter our degree of engagement, we have CF and therefore are part of a community larger than we are. Choosing to play a part in the community can be one of the most…
Healthcare professionals are unavoidable when dealing with chronic illnesses like cystic fibrosis. Our doctors and nurses are crucial to our health and often become like family, thanks to how regularly we see them. In the best case scenarios, through beautiful collaboration in treatment approach, a friendship can blossom. However, there can be…
We’re back this week with part two of our CF Mamas Interview Series, this time we’re discussing the impact of pregnancy on health, delivery, and breastfeeding! (Check out last week’s post.) (Courtesy of Janeil Whitworth) Cystic fibrosis and pregnancy: Gillian Mocek: “As expected, my blood sugars…
August kicked off with World Breastfeeding Week, a celebration recognized by more than 79 countries that promotes breastfeeding for the first six months of life. The celebration made me wonder about pregnancy and motherhood for women with CF. The topic of pregnancy and motherhood seems foreign and undiscussed in the…
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