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2 months ago | 
cysticfibrosisnewstoday.com | Kristin Entler |Margarida Maia |Nicole Kohr |Steve Bryson
“It’s been over a month and I don’t feel right,” I tell my mom as we’re making dinner. She’s mixing Caesar salad dressing and Parmesan cheese into the fresh lettuce I bought from the farm stand. I rub my rib cage where it’s sore, then slowly lift my arms above my head to gently stretch my spine. “I know,” she says, the concern in her voice noticeable. It’s the same worry I’ve heard my whole life in my closest friends’ voices.
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Oct 24, 2024 | 
cysticfibrosisnewstoday.com | Lindsey Shapiro |Andrea Lobo |Nicole Kohr |Katherine Poinsatte
Cilia, the structures on the surface of respiratory cells that help propel mucus out of the airways, have altered movement patterns in people with cystic fibrosis (CF), a study from Belgium found. The researchers believe these abnormalities likely stem from inflammation and contribute to impaired mucociliary clearance (MCC) in CF patients.
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Aug 22, 2024 | 
cysticfibrosisnewstoday.com | William Ryan |Steve Bryson |Nicole Kohr |Kristin Entler
Last weekend, I was at my local pharmacy buying birthday cards when I remembered that I needed to pick up the insulin refill my endocrinologist had ordered the day before. After giving the cashier my name and date of birth, I paid $3 for my monthly insulin pack, which I take for my cystic fibrosis-related diabetes. The insulin price left me incredulous. It was only two and a half years ago that I was paying about $60 for the same prescription.
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Jul 29, 2024 | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Lindsey Shapiro |Margarida Maia |Nicole Kohr
Cystic fibrosis (CF) is a complex disease that affects each of us differently. However, many outside factors impact our lives in ways healthy people often don’t realize. In this column, I want to spread awareness of one of the many challenges and stressors involved in living with CF: the dependence on electricity. As of this writing, I’ve been without power for 48 hours. Two nights ago, a severe storm passed through our town in southeastern Pennsylvania.
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Jul 26, 2024 | 
cysticfibrosisnewstoday.com | Lara Govendo |Lindsey Shapiro |William Ryan |Nicole Kohr
After my double-lung transplant six years ago, I struggled to exercise. I was breathless and had symptoms of hypoxia, or low oxygen, which didn’t make sense given that I’d just had my cystic fibrosis lungs removed. Tests showed that my new lungs were healthy, so why couldn’t I breathe? Finding the answer wasn’t easy, but I did learn that persistent advocacy is essential when health crises arise. Before my transplant, I was extremely active.
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Jul 24, 2024 | 
cysticfibrosisnewstoday.com | Marisa Wexler |Margarida Maia |Nicole Kohr |Andrea Lobo
The first cystic fibrosis (CF) patient has been dosed in Part A of a Phase 2 clinical trial in Europe that’s testing Enterprise Therapeutics‘ novel CF treatment candidate ETD001. The Phase 2a trial (NCT06478706) is still recruiting adults with CF at a few sites in the U.K. and Germany, with more study centers expected to open in those countries, as well as in France.
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May 24, 2024 | 
cysticfibrosisnewstoday.com | Lara Govendo |Nicole Kohr |Marisa Wexler |Lindsey Shapiro
As we approach the end of Cystic Fibrosis Awareness Month, I want to share some wisdom I wish my younger self would’ve known at the start of my journey with this rare disease. Perhaps you’re in a similar situation and can relate to this advice. Dear younger me:I want you to know that you have inherent value as a human being. You are deeply loved by God and those who see you as you are. You don’t have to strive to be the same as everyone else. Focus on being yourself and you’ll find your people.
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May 10, 2024 | 
cysticfibrosisnewstoday.com | Lara Govendo |Susie Strachan |William Ryan |Nicole Kohr
Since I was born with cystic fibrosis (CF), gaining weight has always been a challenge for me. CF doesn’t only affect the lungs; it can also cause a number of gastrointestinal (GI) issues. Because my body lacks the salt content to move fluids effectively through my system, my GI tract can get clogged with thick, sticky mucus. Additionally, the ducts in my pancreas get clogged, preventing the release of enzymes necessary for digestion.
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Mar 1, 2024 | 
cysticfibrosisnewstoday.com | Lara Govendo |Nicole Kohr |Jennifer Bleecher |Margarida Maia
Born with cystic fibrosis (CF), I’ve been told my whole life that there’s a number on my head. I’ve written about my beef with life expectancy before, but to sum it up quickly, thinking about death and dying is normal for me. Mortality is a common topic of conversation in the CF and transplant worlds, so I’m used to talking about it. And contrary to the majority of the population, I’m not afraid of death. That wasn’t always the case, though. As a child, I was always hyperaware of my mortality.
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Jan 19, 2024 | 
cysticfibrosisnewstoday.com | Kristin Entler |William Ryan |Nicole Kohr
“When can we get out of here?” my mom asks the group of doctors on their daily rounds. I’m in a hospital bed, tape tugging at my skin as a nurse unhooks me from an IV antibiotic. While she presses buttons on the machine, I reach over to the overbed table and grab the saline syringe, prime the air out of it, connect it to my PowerPort, and flush the line myself.
