Difference Between PCD and CF—having both?—Why Awareness Matters.

The Difference Between PCD and Cystic Fibrosis – and Why Awareness Matters

When people ask about my daughter’s health, I often find myself explaining two diagnoses that most have never heard of — Primary Ciliary Dyskinesia (PCD) and Atypical Cystic Fibrosis (CF). While both are rare, chronic respiratory diseases, they’re not the same — and understanding their differences matters more than you might think.

🧬 What Is Primary Ciliary Dyskinesia (PCD)?

PCD is a rare genetic disorder that affects the tiny hair-like structures in the respiratory tract called cilia. These cilia are supposed to move like little brooms, sweeping mucus, bacteria, and debris out of the lungs. In someone with PCD, the cilia don’t work properly — or at all. That means all that junk gets stuck, causing recurring infections, inflammation, and damage over time.

🧪 What Is Atypical Cystic Fibrosis?

Cystic Fibrosis is more widely known, but “atypical” CF means it doesn’t present the classic way. It can affect one system more than others (like the lungs or GI tract), and symptoms might not show up right away. But make no mistake — it still requires serious care and lifelong management.

💡 How Are They Similar?

Both conditions:

Affect the lungs and airways
Require daily treatments to clear mucus and prevent infection
Can cause serious complications if not managed
Are invisible to the average person — but life-altering for those living with them

🧡 What Happens When You Have Both

That’s where things get even more complicated — and personal.

My daughter, Jentri, was diagnosed with both PCD and Atypical CF. Having one of these conditions is rare enough. But having both? She’s what I lovingly call a medical unicorn — unique, extraordinary, and incredibly strong.

It also means her care is layered, complex, and often filled with unknowns.

Jentri sees two separate specialist teams — one for CF and one for PCD. She takes medications designed for CF patients and treatments designed for those with PCD. There is no exact playbook or protocol for having both, which means a lot of trial-and-error, advocating, and deep trust in her care team.

We often find ourselves asking questions with no clear answers. Because the overlap between these conditions isn’t widely studied or understood — yet.

🔍 So, Why Does This Matter?

Because when people don’t understand the difference — or even that there’s a difference — they tend to downplay the struggle. I’ve heard things like:

“She looks fine.”

“At least it’s not real CF.”

“She’ll grow out of it, right?”

And while those comments may come from a place of ignorance rather than malice, they still hurt.

💬 What I Want People to Know:

Rare doesn’t mean less serious.
You don’t have to see it to believe it’s real.
Families like ours fight silent battles every single day.

🎗️ Awareness Brings Understanding

Every post I make, every shirt I design, every conversation I start — it’s not just for my daughter. It’s for the next child who gets diagnosed. It’s for the mom sitting in a hospital room googling acronyms she never heard of before. It’s for awareness. It’s for change. It’s for Jentri.

With love,

Kursti, Founder of Breath in Bloom Collective and Jentri’s Mom