During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Jarrod Landau, an adult with CF.

Living with cystic fibrosis (CF) has always been a challenge, but for the majority of people with CF, the arrival of mutation targeted therapies (CFTR modulators) has transformed daily life, dramatically reducing the treatment burden and improving health outcomes. However, for the final 10% of the CF population—including myself—these breakthroughs don’t work. Our mutations don’t respond to modulators, leaving us in a holding pattern as we wait for the next wave of scientific advancements.

Being in this minority shapes every aspect of my daily routine. It’s a unique space to occupy—watching others experience dramatic health improvements while knowing that, for now, my options remain the same while my disease continues to advance. But rather than dwell on what I don’t have, I focus on what I poder control. Through years of trial and error, I’ve developed strategies to stay positive, hopeful, and proactive while navigating life in the final 10%.

Focusing on What’s in My Control

One of the most powerful tools I’ve developed is a mindset shift: instead of fixating on what’s missing, I focus on what I poder influence. My health, my outlook, and my actions are all within my control, and I make them my priorities.

A cornerstone of this approach is my treatment regimen. I take every medication and complete every therapy session without fail. It’s a significant time commitment—about three hours per day—but it’s non-negotiable. Over time, I’ve built my routine in a way that integrates treatment into my life rather than allowing it to take over. Since I do most of my treatments at my desk, I can watch TV, read, or work on my computer at the same time. When I was a kid, this kind of multitasking wasn’t possible. Now, these small adaptations make a world of difference in making my treatment burden feel more manageable.

The key is to keep moving forward, even when progress feels slow. While my daily routine may not come with the immediate benefits that mutation-targeted therapies provide for others, I find comfort in knowing that I’m doing everything in my power to stay as healthy as possible.

Small Wins and Incremental Progress

In a world where medical breakthroughs often feel like all-or-nothing events, I’ve learned to celebrate small wins. These may seem insignificant from the outside, but they’re vital for maintaining motivation and resilience.

Some days, a small win looks like finishing a workout I didn’t feel up to starting. Other days, it’s discovering a new supplement, treatment approach, or research study that gives me a renewed sense of possibility. When facing an exacerbation, or worsening of my CF pulmonary symptoms,, I look for ways to adjust my routine to optimize my recovery. Every little step adds up, and collectively, they fuel my perseverance.

For me, progress isn’t just about waiting for the next big breakthrough—it’s about actively seeking ways to improve my daily quality of life. Every time I refine my treatment approach or find a new strategy that helps me feel better, I’m moving in the right direction.

Exercise as a Tool for Mental and Physical Strength

Another fundamental part of my strategy is exercise. While it’s well-documented that physical activity is beneficial for people with CF, I view it as more than just a way to keep my lungs clear—it’s a mental reset, a form of self-empowerment.

There’s something about pushing through a difficult workout that reinforces my inner resilience. When I do intervals, swim, or walk up a steep hill, my mind often tells me I can’t go any further—but I push through anyway. I use exercise as a way to remind myself that I’m in control, that I can challenge my body and come out stronger.

This mindset has been invaluable, especially during times when my health has been unpredictable. Exercise teaches me that struggle doesn’t mean defeat—it’s just a step in the process.

The Power of Community and Support

While self-discipline is crucial, I’ve also learned that I can’t navigate this journey alone. The CF community, particularly those of us in the final 10%, plays a huge role in keeping me motivated and hopeful.

One of the most meaningful ways I stay connected is through organizations like Emily’s Entourage. This group focuses on accelerating research for people with CF who don’t benefit from existing mutation-targeted therapies, and being involved gives me a sense of purpose. Knowing that people are relentlessly pursuing  solutions specifically for our community makes a world of difference.

Holding Onto Hope for the Future

Though it can be frustrating to wait for new treatments, I refuse to lose hope. Advances in gene therapy and mRNA-based treatments are progressing rapidly, and it’s only a matter of time before solutions emerge for the final 10%. The science is evolving, and I believe the breakthroughs we need are within reach.

In the meantime, I channel my hope into action. I stay engaged in research, I take care of my health, and I embrace the mindset that every step forward—no matter how small—is worth celebrating.

For those of us in the final 10%, the road ahead may feel uncertain, but history has shown that progress never stops. Hope is our most powerful tool, and as long as we keep pushing forward, the breakthroughs we need will come.

Autor

Jarrod Landau is an adult living with cystic fibrosis in Australia.