In January, I underwent successful phage therapy -- an experimental treatment in which viruses are used to kill difficult-to-treat bacteria. To get a better sense of the future of this potential treatment option for other people with CF, I chatted with the head of the Infection Research Initiative at the Cystic Fibrosis Foundation.
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Although I did my homework before having surgery to remove part of my liver, the process presented me with surprises and challenges. Here's what I learned from it.
Although cystic fibrosis is often considered to be primarily a lung disease, it is actually so much more.
I have had two collapsed lungs in three years. Here's what I learned.
As a medical professional who has cystic fibrosis, I have experienced both sides of pain management and chafed under the new rules for prescribing pain medications brought about by a nationwide opioid crisis. Despite having to add yet another doctor to my long list of providers, a trip to a pain management specialist wasn't as bad as I thought.
As someone with cystic fibrosis, Lynch Syndrome, and CF-related diabetes, preparing for a colonoscopy can be a challenge. Fortunately, I've become very well-versed in how colonoscopies work and how to prepare for them over the past 10 years.
Burkholderia cepacia took a toll on me physically, but overcoming the emotional blow was even more difficult.
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.
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.