Living with an illness like advanced lung disease can be incredibly isolating and limiting. But I’ve found a way to connect with others and make my own adventures through online gaming.
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CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.
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.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
When I started coughing up blood, letting my care team know helped me handle it the next time.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
Caring for a child with CF can be a lot to juggle — from the many medications and daily treatments to the endless doctor's appointments. But I’ve found a system that helps me stay organized and stress-free so that I can focus on what really matters.
I was recently reminded of what my life used to be like before Trikafta® — and I immediately felt guilty for forgetting. But maybe it’s OK to let go of the past and embrace a future of hope.