After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
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Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.
I had never heard of cystic fibrosis until I received my diagnosis — but learning how to navigate my CF prepared me to advocate for my husband’s medical care and helped me grow as an artist.
Watching a Bruce Lee movie inspired me to live my life on my terms.
Burkholderia cepacia took a toll on me physically, but overcoming the emotional blow was even more difficult.
There are a lot of misconceptions about illnesses. For one, you're supposed to look sick -- or like other people's perception of a sick person. Once I started to doubt myself and the gravity of my illness, I began internalizing a whole lot of guilt.
Taking a therapeutic writing course helped me cope with my cystic fibrosis, which also helped me connect more strongly to the CF community.
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.
My pulmonary function test results are important in telling me about my cystic fibrosis, but it's only one measure of my overall health.