Religiously following a schedule and maintaining a to-do list may not seem like much fun, but they have brought sanity and wellness to a hectic life filled with graduate classes and cystic fibrosis treatments.
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Participating in the RARE study gave me an opportunity to play a role in finding a therapy that one day could help me and other people with CF who have two nonsense mutations.
College life can be stressful when you need to fit in time for classes, treatments, and a part-time job. Now in my second year of law school, I have developed a system that can help you stay organized and balanced.
Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.
Cystic fibrosis forced me to drop out of high school. After earning my GED, I'm in college and more determined -- than ever -- to finish.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
As a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.
About a year and a half ago, I started preparing for three students with cystic fibrosis at the school where I work as a school nurse. Here's an update on how things have been going.
Sending your child to kindergarten for the first time is hard enough, but when your child has cystic fibrosis, it is even harder. Here's how I handled my daughter's transition to kindergarten and the lessons I learned along the way.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.