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?"

In Cystic Fibrosis care, all you hear about is your condition - how your medications help your condition, how school is going considering your condition, how you exercise despite your condition. Over and over again, day-to-day life revolves around being chronically ill, and it becomes the focus of every moment of your life and of every breath. You’re constantly taught to base everything around illness: How much you eat, how you exercise, what your interests are, they all end up orbiting - however distant - the fact that you have CF. Growing up, it took constant, conscious effort to live a life that wasn’t held back or defined by diagnoses, and as symptoms became worse, that was what kept me from becoming completely absorbed and defeated by CF. But that effort didn’t come from my medical team, nor from the guidance of any medical authorities - it came from my parents, who lived full, interesting lives before they had me, and who continued to do so after. People with CF need to feel like they’re more than just a hospital number. They should be a person first, and a patient second. To do this, I feel that a group with a massive reach - like the Cystic Fibrosis Foundation - needs to create accessible initiatives to help patients live a life not in cooperation with their illness, but in spite of it. Cystic Fibrosis care should be a part of a person’s life, but not the defining action of it.