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.
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There's a lot of buzz around personalized medicine, but what does it really mean? In the first plenary at NACFC, John P. Clancy, M.D., outlined the history of personalized medicine, where we are now and what the future holds. Read on for a quick recap.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
I struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
I could fill a book with all the things I learned at the virtual North American Cystic Fibrosis Conference this year, but I am especially glad that there was a focus on diversity, gender health, and sex-based differences in CF.
I used to think that genetic-based treatments for cystic fibrosis were mostly theoretical. After watching the first plenary for the North American Cystic Fibrosis Conference, I now know that scientists have a concrete understanding of the work that needs to be done and realistic plans for how to accomplish it.
COVID-19 presented all of us with a great deal of uncertainty. Fortunately, several sessions at the North American Cystic Fibrosis Conference helped provide some data -- and some relief.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
In the third plenary, Dr. Peter Mogayzel reminds us of the challenges faced in CF care, the progress we've made, and the work still ahead to meet the needs of all with cystic fibrosis and their families.
I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.