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MAC & Bronchiectasis | Last Active: 3 days ago | Replies (17)
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@helen1000
Helen, I had BE for 19 years , then was tested for cf in 2025. They found one variant, so not full blown cf but, according to my pulmonologist, it is the major risk factor for my BE. A sweat test at NJH a few years ago was in the high normal range so they did not do the genetic testing. My pulmonologist (Emory in Atlanta) who ordered it did so based on my CT scan and the patterns he saw in it. They should be able to run full genetic testing to see if you have more variants. Since it’s genetic, I don’t see how you could develop more variants- they’re either there or not. Good luck going forward
Replies to "@helen1000 Helen, I had BE for 19 years , then was tested for cf in 2025...."
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@cayenne Eric Sorscher at Emory is studying the use of Trikafta in BE treatment of NTM infections in CF carriers in a small clinical trial (ID NCT05743946)
Here's a link to a the case reports that led to the trial. They used Trikafta (aka ETI) in 3 people without CF but with BE and NTM infections who all carry F508del, the most common CF mutation in the Caucasian population.
https://www.gavinpublishers.com/article/view/treating-non-cystic-fibrosis-bronchiectasis-with-cftr-modulators-early-case-reports