Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
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Although I admired bodybuilders when I was growing up, I thought pumping iron and building muscle was impossible with cystic fibrosis — so I didn’t even try. After a hospitalization, my passion for fitness was rekindled and I discovered I could build muscle mass and improve my health.
We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.
I have always been very interested in science, eventually leading to my career as a genomic scientist. My curiosity helped me cope with the uncertainties of cystic fibrosis, leading me to many academic, professional, and personal opportunities that gave me a more expansive view of how my different roles and identities can build upon one another.
After traveling to over 20 countries, I’ve learned that cystic fibrosis doesn’t have to hold me back from experiencing life abroad. Here are some tips for traveling with CF.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.
The physical and emotional toll of CF can sometimes make me feel isolated from my peers. But I’ve learned being vulnerable about my struggles can create stronger relationships that make me feel supported and loved.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.