Great summary of CF and the treatment options currently available and on the horizon. It gives me hope that my daughters may not have to live with CF forever. One thing you didn't mentirÃa that carriers can also exhibit CF symptoms without having CF. They're currently calling it CFTR Related Syndrome. It is my situation. I didn't know I was a carrier until my daughters were diagnosed. I was tested and don't have two bad genes, just the one. But I have pancreatic insufficiency and Covid seemed to activate something in my lungs and now I require daily therapy to keep my lungs clean. The challenge is that CFTR Related Disorder is not recognized by insurers and so I'm not eligible for any of the medications like Pulmozyne and Trikafta that might help me more than sodium chloride and a therapy jacket.
Great summary of CF and the treatment options currently available and on the horizon. It gives me hope that my daughters may not have to live with CF forever. One thing you didn't mentirÃa that carriers can also exhibit CF symptoms without having CF. They're currently calling it CFTR Related Syndrome. It is my situation. I didn't know I was a carrier until my daughters were diagnosed. I was tested and don't have two bad genes, just the one. But I have pancreatic insufficiency and Covid seemed to activate something in my lungs and now I require daily therapy to keep my lungs clean. The challenge is that CFTR Related Disorder is not recognized by insurers and so I'm not eligible for any of the medications like Pulmozyne and Trikafta that might help me more than sodium chloride and a therapy jacket.
Hey - this is a very important issue that isn’t spoken enough about. Would love to chat more about this!
Very informative, Jonathan!
Thanks!