Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.
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As a mother with cystic fibrosis, I have learned to prioritize my mental and physical health in order to stay healthy for my two young daughters. I have invited them to come alongside me on my journey as we cherish the little moments in our lives.
Art has been my therapy throughout my life, but it took on new meaning when I had a daughter with cystic fibrosis. Now creating artwork helps carry me through the stress of CF life.
My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.
Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.
Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.
I have learned a lot about myself in the three years since I started Trikafta®. Even though I am healthier, I feel less connected to the cystic fibrosis community and my care team.
After starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.
Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.