Meet the 2020 Scholars

"What do you believe is the greatest unaddressed patient need in the CF community, and if you could, how would you try to fix it? Who would you partner with (e.g. public figure, organization) to help fix the issue and why?"

It is no surprise that lung health is the primary focus of CF care, but I believe that the greatest unaddressed patient need in the CF community is the need for more focus on the parts of the digestive system and its disorders. As a result of extensive research, modern technology, and drug development, CF patients are living longer lives than ever before. With this increased longevity, new issues are beginning to plague the CF community. As CF patients live longer lives, more instances of liver disease, colorectal cancer, and diabetes are being diagnosed. The increased chance of liver disease, as a result of Cystic Fibrosis is especially important to me personally. Imagine my surprise and confusion when I recently became aware of Cystic Fibrosis-related Liver Disease, due to the fact that my liver enzymes are elevated and have been abnormal for the past five years. In all my years living with Cystic Fibrosis, I have always maintained near perfect lung function. What I did not realize was that my digestive system is not so perfect. To help address this need, I think it would be beneficial to add a gastroenterologist to all CF Care Teams. A specialist in digestive health would be more likely to spot symptoms and diagnose issues with the liver, pancreas, or gallbladder before they become critical. To accomplish this, I would partner with the CF Foundation to create a nationwide initiative to make a gastroenterologist a required team member of every CF Care Team.