Researchers are exploring treatments that will keep people with cystic fibrosis as healthy as possible until a cure is found. In the first plenary at the NACFC, two CF scientists explain the progress of current research.
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When I decided to study abroad in 1974, I also decided that I would not allow CF to stop me from living my life to the fullest.
This year at the 30th Annual North American Cystic Fibrosis Conference in Orlando we have three sessions just for the online cystic fibrosis community.
My oldest son, Nathan, was 18 years old when he was finally diagnosed with cystic fibrosis. While we both had been waiting a long time to get an answer to what had been plaguing him, I'd been hoping and praying that he'd escape the CF sentence. The diagnosis, however, did not come as a surprise because exactly 35 days earlier, my younger son, Caleb, at 14 years, had already been diagnosed with CF.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
When I was 13, my family went from having two seemingly normal kids to two CF patients in a manner of a few short months -- and boy, did it change everything. Because of my late diagnosis, I faced a unique set of challenges that helped make me the strong person I am today.
There was a clear message in today's second plenary at NACFC: no matter what role you play -- physician, scientist, person living with CF, parent, fundraiser, regulator -- it is going to take a tremendous team effort to advance new therapies as fast as possible and eventually find a cure for CF.
Cystic fibrosis can't take living away, especially when one loves life!
I knew that I needed to make a change when I began checking on home from the office and checking on work at odd hours from home.
While I am not grateful for having cystic fibrosis and cystic fibrosis-related diabetes, I have no doubt that if it weren't for me having CF, I would not have become the person that I am today.