Burkholderia cepacia took a toll on me physically, but overcoming the emotional blow was even more difficult.
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I have faced numerous health challenges in my life, including a recent diagnosis of osteopenia. Despite this, I am resilient, grateful, and determined to take care of myself while finding strength in the cystic fibrosis community.
My brother received a liver transplant the day before his 15th birthday but soon needed another.
I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.
Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
Cystic fibrosis is unpredictable and I've found that some of the complications aren't as progressive as the disease.
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.
Managing your blood sugar if you have cystic fibrosis-related diabetes is difficult, but the glycemic index can help.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.