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.
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While you are grinding through a seemingly never-ending cycle of cystic fibrosis treatments, it also can be helpful to engage in self-care activities that bring you happiness. This nurturing routine can help you keep perspective and remind you of why you are undergoing all these treatments in the first place.
Even though I've been vaccinated against COVID-19, I've been using a risk assessment tool to try to make sure that I'm still being as safe as possible.
For the most part, I have been fortunate with my cystic fibrosis in that I never needed to go into the hospital. But, that all changed in 2008. Fortunately, I was able to start using Kalydeco. My health improved, and I was able to continue my career in radio and TV.
I spent most of my life hiding the fact that I had cystic fibrosis. It was only when I fully accepted that CF was a part of me that I quit my self-destructive ways and began to enjoy life.
It's hard not to feel guilt for all those years my partner spent taking care of me as I got more and more sick from cystic fibrosis. This Valentine's Day, I'm not going to dwell on the past. I'm going to focus on how much we love and care for each other right now.
The unexpected ups and downs of having a son with cystic fibrosis sometimes makes me feel like I'm on a game-show obstacle course, dodging punches and avoiding the mud pit. It helps to do my research, keep lists, rely on my support team, and take some “Mommy time” to get through life's daily challenges.
As a person with cystic fibrosis, I used alcohol and drugs to fit in with my peers and cope with the hardships of having a chronic disease. I still struggle with sobriety, but I have taken control of my health and my life.
This year, I'm planning a big, beautiful queer wedding with my fiancée, Ali. Even though I felt conflicted about bringing Ali into a life with CF, she stayed by my side through some of the hardest challenges I've ever faced.
Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.