I was wide awake during a presentation about sleep, but that’s exactly what happens when you hear Dr. Kimberly Canter speak about the connection between sleep and cystic fibrosis.
As the mom of two daughters with CF, I know firsthand how elusive a good night’s sleep can be. For years, our nights included coughing, breathing treatments, medications, hospital stays, and the constant worry that comes with raising children with a chronic illness. Sleep wasn’t simply about feeling rested it was about survival, healing, and making it through another day.
That’s why Dr. Canter’s presentation resonated with me, and it will with you.
Dr. Kimberly Canter is a pediatric psychologist, Senior Research Scientist at Nemours Children’s Health, and Associate Professor of Pediatrics at Thomas Jefferson University. Her work focuses on improving the emotional and physical well-being of children and families living with chronic illnesses, including cystic fibrosis.
One of the biggest takeaways? Sleep isn’t a luxury, it’s a critical part of CF care.
As Dr. Canter explained, sleep influences nearly every aspect of our health.
“Sleep impacts every single part of our life, of our health, at the physical level, at the mental level.”
For people living with CF, sleep is often interrupted by persistent coughing, airway clearance treatments, sinus issues, medications, hospital routines, and the overall burden of managing a complex disease. Even when someone finally gets into bed, staying asleep can be difficult.
Poor sleep doesn’t just leave someone feeling tired the next day. Research shows it can affect lung health, weaken the immune system, increase the risk of infections, and contribute to anxiety and depression.
One topic I found especially interesting was Dr. Canter’s discussion about CFTR modulators.
These remarkable medications have transformed the lives of many people with CF, but researchers are also learning that some patients experience new or worsening sleep problems after starting these therapies. It’s another reminder that while treatments continue to improve, there is still much to learn about the day-to-day experiences of people living with cystic fibrosis.
Dr. Canter also spoke about something that doesn’t receive enough attention: medical trauma.
Repeated hospitalizations, frightening procedures, and years of living with uncertainty can leave lasting emotional effects. For some patients, those experiences contribute to PTSD-like symptoms, anxiety, and ongoing sleep disturbances.
It’s a powerful reminder that caring for someone with CF means caring for both their physical and emotional health.
Perhaps the most practical advice Dr. Canter shared was also the simplest.
“The most important initial step is to talk with your care team and make them aware that there is a problem.”
Too often, families accept poor sleep as “just part of CF.” But it doesn’t have to be ignored. Whether it’s adjusting treatment schedules, exploring behavioral strategies, addressing anxiety, or making accommodations at school during particularly difficult periods, there may be solutions that can help.
Living with cystic fibrosis has changed dramatically over the past decade. People are living longer and healthier lives than ever before, thanks to extraordinary scientific advances. But quality of life matters just as much as longevity.
Sleep is one of those everyday challenges that often flies under the radar, yet it influences physical health, mental health, relationships, school, work, and overall well-being.
As a CF mom, I left Dr. Canter’s presentation with a deeper appreciation for something so fundamental—and a reminder that sometimes the conversations we need most are about the things we rarely talk about.
If you or someone you love is living with cystic fibrosis, I hope this encourages you to ask about sleep at your next clinic visit. It could make a bigger difference than you realize. Thank you.