The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
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.
BLOG
It might seem strange but for someone with cystic fibrosis, something as simple as a mammogram can spark joy. It means that I have lived long enough to have reach this preventive care milestone, and that is something to celebrate.
BLOG
Dance has always been my passion, and it led me to audition for my dream reality show, “So You Think You Can Dance.” Although I never thought anything could top my experience on the show, Trikafta® has exceeded my expectations, and I am feeling better than ever.
BLOG
Because of the shortened life expectancy projected for those with cystic fibrosis, I was always cautious about the idea of having children. Those fears melted away after I started Trikafta® and received the greatest surprise of my life.
BLOG
Like everyone else, I was excited to finally have a modulator that would work for me. Shortly after I started Trikafta®, though, I developed severe GI problems, and I was left to worry what this meant for my future on the drug.
BLOG
Trikafta® restored my energy and eliminated my cough, but a spike in liver enzymes forced me to take a month-long break from the medication. I'm grateful that I'm back on it and also thankful for what that break taught me.
BLOG
As a person with cystic fibrosis, I struggled all my life to gain weight, despite eating a high-calorie, high-fat diet. Once I started Trikafta® and my weight increased to normal levels, I had to learn a new, healthier way to eat.
