Fibrolamellar fighter Mark Carles described his fight with FLC and the challenges he has faced over the last year at a “Rare Disease Day” event held in Greenwich, Connecticut on February 26, 2021. Carles, a former triathlete and graduate student, was diagnosed in October 2018 at the age of 24.
In his remarks, Mark said that “… the toughest part about being sick during this COVID pandemic has been loneliness.” In the past, he’d always bring an entourage of family and friends to his appointments, who would cheer him on during his treatments and scans. He explained how technology has helped fill that gap with a reference to Tolkien’s The Lord of the Rings. In their quest to defeat the ring “… Frodo always had Sam by his side,” Mark said. “I had to find my Sam during this pandemic … and what was my solution? – FaceTime and Zoom! I taught my parents how to utilize Zoom back at the hotel, while I was deciding which chemotherapy to start at the hospital with my oncologist.”
FCF thanks Mark for sharing his story with the Greenwich community, and hope that his message spreads nationwide. Building awareness of patients’ struggles with diseases like fibrolamellar can increase critically necessary research into potential new therapies for all rare diseases.
Press coverage of the event and Mark’s participation includes:
Greenwich Proclaims Feb. 26 as ‘Rare Disease Awareness Day’ | Greenwich Sentinel
Rare Disease Awareness Day Critical As Patients Struggle During COVID Times | PRUnderground