Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
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Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
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.
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.
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.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
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.