The Things I Wish People Knew About PCD and Atypical CF
When your child is diagnosed with not just one, but two rare lung diseases — Primary Ciliary Dyskinesia (PCD) and Atypical Cystic Fibrosis — you quickly realize how much the world doesn’t understand. And honestly? I didn’t either at first.
Over the years, I’ve become a mama, a nurse, a researcher, and an advocate — not because I wanted to be all those things, but because I had to.
Funny enough, I actually am a licensed vocational nurse in real life, and her dad is a respiratory therapist — and even with our combined medical backgrounds, nothing fully prepared us for raising a child with complex, rare diseases like these. When it's your own child, it hits completely different.
There are a few things I wish people truly understood about what this journey looks like:
1. It’s not “just a cough.”
PCD and Atypical CF aren’t seasonal colds or a little congestion. These are chronic, lifelong illnesses that impact every single breath my daughter takes. The cough isn’t something that goes away in a few days — it’s a symptom we monitor daily. Behind that cough are thick secretions, airway clearance routines, medications, and the constant worry about infections.
2. She doesn’t “look sick” — and that’s part of the problem.
From the outside, she looks like a normal, thriving kid. And in so many beautiful ways, she is. But invisible illness is tricky — most don’t see the treatments before school, the appointments, or the fatigue. They don’t see the moments when she’s struggling to keep up or hiding how short of breath or tired she really is.
3. This journey is exhausting — emotionally, physically, mentally.
Between clinic visits, insurance battles, medications, airway clearance, PICC lines, hospital stays starting at 14 days minimum and just trying to let her be a kid — it’s nonstop. And no matter how tired I am, I show up, because she needs me to. The world doesn’t pause for rare diseases, but everything in our life revolves around them.
4. Support matters — even the smallest kind.
A text. A “how’s she doing?” that isn’t just small talk. A friend who takes time to learn about PCD or CF. It means everything. These diseases can be isolating — especially when you’re one of the only families around dealing with them. Real support doesn’t fix things, but it reminds us we’re not alone in this.
5. She is so much more than her diagnosis.
Yes, she has PCD and Atypical CF. But she is joy, sass, creativity, and strength wrapped into one amazing girl. Her diagnoses may shape part of our journey, but they do not define her — and they definitely don’t limit the fire she carries inside.
I started Breath In Bloom Collective because we couldn’t find anything that represented her story. Nothing cute, nothing bold, nothing that said “this matters” in a way that matched her strength. So I created it — for her, and for every other family fighting battles the world can’t see.
Thank you for being here. For reading, for caring, for learning.
You’re helping us spread awareness — one breath, one story, one shirt at a time.
💙
— Kursti
Jentri’s Mama | LVN + Founder of Breath In Bloom Collective
P.S. Her dad’s a respiratory therapist — talk about meant to be.
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