The cystic fibrosis community has come far, but we have a long way to go

Fifty years ago, a cystic fibrosis (CF) diagnosis meant something very specific: a short life, mostly counted in hospital stays and loss. Parents received the diagnosis and were quietly told not to plan far ahead. There was no genetic map, no targeted therapy, and no database of mutations. Back then, there was just the disease, the people who loved someone with it, and the doctors and nurses who showed up every day without a road map.

I was born into that era. This summer, I turn 55. I carry that number like something I never expected to have. First, I fought to breathe with my own lungs. Then, after my CF lungs failed, I breathed thanks to a double-lung transplant that gave me more time. Now, I live in the unique stage of life after a transplant — deeply grateful, but aware that my journey continues, just on a new path.

But the world I was born into and the world of CF today? They are almost unrecognizable to one another. And in the spirit of this year’s CF Awareness Month theme in Australia, “strength in community,” I want to stop and honor all of it: the progress, the people, and the distance still ahead.

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How far we’ve come

Researchers have now identified more than 2,500 mutations of the CFTR gene. These variants can cause the same disease to manifest in countless ways. In 1975, CF was seen as one condition. Today, it can look very different for each person.

Think about all that has changed. We have CFTR modulators now. Therapies like Trikafta (elexacaftor/tezacaftor/ivacaftor) have rewritten what daily life with CF can look like for those with certain mutations. We have targeted antibiotics that didn’t exist a generation ago. We have airway clearance devices, inhaled therapies, nutritional support, and care teams covering many specialties. We have CF centers with dedicated coordinators. Lung transplant programs have given thousands, including myself, more chances. We have the internet, turning isolated patients into a community and single voices into a collective power. Now, artificial intelligence is reshaping healthcare.

None of this materialized from thin air. Every single advance was built on the shoulders of people who came before us. The nurses who stayed late. The researchers who dedicated their careers to a problem the world wasn’t watching. The doctors who treated patients like whole human beings. Every single person who donated to research contributed. Most of all, those with CF who didn’t survive long enough to see today are not footnotes; they are the foundation. Every breath we take is borrowed from what they endured, what they fought, and what they gave the community by living as long and fully as they could.

We are not a collection of individual struggles happening in parallel. We are one long, connected story — and every person in it matters.

But I also need to say this clearly: We are not at the finish line. Not even close.

How far we have to go

For those thriving on modulators, I celebrate you completely. Your better days are a victory for all of us. Yet right alongside you in this community are people for whom those therapies are out of reach. Some, like me, have rare mutations the drugs weren’t designed for. Some can’t tolerate them. Some had disease progression before treatment arrived. And those of us post-transplant live in a new kind of uncertainty — where CF is no longer in our lungs, but the clock is still running and asking things of us every day. CF also remains in the rest of our bodies.

This disease now looks very different from one person to the next. The variance is genuinely staggering. Two people with CF may have almost nothing in common in their daily reality — their mutations, their treatments, their prognosis, their relationships with their own bodies. That diversity is a sign of progress, yes, but it also means we must resist any single narrative about what CF is or what surviving it looks like.

This May, I want to honor it all. The long arc of 50-plus years. The ones we’ve lost along the way. The nurses and doctors who carried us. The researchers who never stopped. The patients who became advocates. The communities formed in waiting rooms, online forums, and hospital hallways. The transplant recipients who are running their own new race, with a donation unlike any other. The people still waiting for a modulator that works for them. And to the ones doing beautifully, keep going, keep shining, and keep standing with those of us still in the thick of it.

We are not done, but we have never been alone. And that is strength in community.

Until the day CF means “Cure Found,” we move forward together, with purpose and hope.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.