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?"

She was a young child whose life consisted of hospital admissions. However, she was always healthy enough to lead a normal life until late 2016 when her health plummeted. That girl was me. I went from a semi-healthy person with CF to someone whose lung function was rapidly declining. In the couple of years after that, I was in dire need of a lung transplant, which I was blessed enough to receive. I had to transition to St Luke’s Hospital and wasn’t at all mentally prepared for it. Although there were many kind medical team members, I feel many patients in the CF community have a difficult time transitioning to a newfound environment and different ambiance. My older sister, who also has CF, still feels heavy-hearted and cannot mention the children’s hospital without getting emotional because of the long-standing connections she’s made with everyone over the years. If I had the chance, I’d work with the CF Adolescent and Transition committee, on addressing how younger patients with CF can properly transition to an adult hospital without them feeling as if they’ve been abandoned, preferably one that keeps lines open for communication with the new hospital. A way where the adult hospital’s CF team is a part of the well-being of the patient starting at an earlier age, so when the time for transitioning comes, they’re familiar with everyone along with their new surroundings and not thrown into the deep end with no life jacket.