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1 month ago | 
cysticfibrosisnewstoday.com | Steve Bryson |Marisa Wexler |Andrea Lobo |Jennifer Chamberlain
Evidence of immune dysfunction — elevated levels of immune cells and immune-related molecules — were found in the lungs of preschool children with cystic fibrosis (CF), even among kids without CF-related lung infections, a new study showed.
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1 month ago | 
cysticfibrosisnewstoday.com | Andrea Lobo |Jennifer Chamberlain |Katherine Poinsatte |Margarida Maia
The U.K. Medicines and Healthcare Products Regulatory Agency approved Alyftrek (vanzacaftor, tezacaftor, and deutivacaftor) as a cystic fibrosis (CF) treatment for patients ages 6 and older. The triple-combination CFTR modulator, developed by Vertex Pharmaceuticals, is indicated for patients who have at least one copy of a responsive mutation, including the most common F508del, the most frequent CF-causing mutation.
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1 month ago | 
cysticfibrosisnewstoday.com | William Ryan |Steve Bryson |Margarida Maia |Jennifer Chamberlain
I can still envision it: The top half of the wall was painted a shade of beige, while the bottom half was covered in blue wallpaper with white stripes. That’s how I remember the room where, at some point during my childhood medical appointments, I’d step into a clear box that had a mouthpiece connected to a tube. The tube went through a small hole in the box and connected to a computer, which measured my lung health as part of a pulmonary function test (PFT).
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2 months ago | 
cysticfibrosisnewstoday.com | Marisa Wexler |Lindsey Shapiro |Andrea Lobo |Jennifer Chamberlain
Young children with cystic fibrosis (CF) have less mature gut bacterial growth over time than do their typically developing peers, according to a new U.S. study. “Our findings demonstrate that the gut microbiota of infants with CF fails to undergo typical developmental maturation, instead remaining entrenched in a transitional-like community state,” the researchers wrote, noting that this leads to “lower levels of beneficial bacteria” in these children as they grow.
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2 months ago | 
cysticfibrosisnewstoday.com | Steve Bryson |Jennifer Chamberlain |Katherine Poinsatte |Margarida Maia
Prenatal Trikafta treatment of three fetuses with cystic fibrosis (CF) for an intestinal blockage called meconium ileus resulted in different outcomes, potentially due to treatment duration, according to a case series. One infant showed a complete resolution of meconium ileus at birth, one had persistent signs that were cleared with minimally invasive treatment, and a third, the one with the shortest Trikafta exposure, had persistent blockages that required surgery.
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Jan 21, 2025 | 
cysticfibrosisnewstoday.com | Jennifer Chamberlain |Andrea Lobo |Patricia Inacio |Lara Govendo
“I hate my treatments. I don’t want to have cystic fibrosis anymore.”That statement came during a recent night with my daughter, Claire, who has the disease. I was trying to persuade her to complete her breathing treatment, but I was facing resistance. As parents of a child with cystic fibrosis (CF), we don’t have a lot of choice about such treatments. They’re a necessity. But how do I express their importance to a just-turned-6-year-old? I feel responsible for how Claire views her condition.
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Jan 13, 2025 | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Steve Bryson |Jennifer Chamberlain |Brad Dell
This month, my beautiful daughter, Claudia, will celebrate her 29th birthday. I was 24 and living with cystic fibrosis (CF) when I became her mother. It’s now been four years since my double-lung transplant, and I’m currently fighting COVID-19 for the fourth time in four years. As the new year begins, I find myself ruminating about the miracle of Claudia turning 29. When I was born in 1971, my mother was told my life expectancy was about 12 years.
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Jan 7, 2025 | 
cysticfibrosisnewstoday.com | Margarida Maia |Kristin Entler |Jennifer Chamberlain |Steve Bryson
Acceptance and commitment therapy (ACT), which helps people accept feelings and adjust behavior, was better than supportive psychotherapy for adults with cystic fibrosis (CF) facing mental health challenges, a small study found. In the trial (NCT04114227) sponsored by Thomas Jefferson University in Philadelphia and with sessions conducted online, researchers also observed that ACT benefits lasted for several months, especially in addressing barriers to treatment and adapting to challenges.
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Dec 9, 2024 | 
cysticfibrosisnewstoday.com | Katherine Poinsatte |Jennifer Chamberlain |Steve Bryson
Children and adolescents with cystic fibrosis (CF) interviewed for a study expressed a desire for active participation in the hospital setting and during CT scans, and wanted greater involvement during longer, more painful procedures. “It’s a fair right to have, after all, [children and adolescents are] the ones [it] concerns,” said a 12-year-old CF patient who participated in the study.
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Dec 6, 2024 | 
cysticfibrosisnewstoday.com | Kristin Entler |Steve Bryson |Jennifer Chamberlain |William Ryan
This past spring, before graduating from my Master of Fine Arts (MFA) program in creative writing, I had one last meeting with my adviser. We connected via Zoom as I sat on my back porch in North Carolina while he sat in his office back in Arkansas. That’s when he asked me a question that, in the moment, caught me off guard. “What’s next?” he asked. The trees behind me in my yard were bright green with springtime, the forest canopy full of birds and baby squirrels.
