PROSE Patient, Alyssa Carfi, is Inspired to Support Others Through the Brave Minds Project
Alyssa Carfi had a brainstem cavernoma, a condition where blood vessels are clustered together, and in her case, lodged deep in her brainstem. The condition caused bleeding in her brainstem three times: when she was 12, 15, and 18 years old. On the third occurrence, her doctors knew they had to try to remove it before it caused further damage. Just three days after graduating high school, Alyssa went in for surgery. Alyssa, standing, with Dr. Michelle Lee, and a PROSE patient who received financial support from Brave Minds. Based on their location, brainstem cavernomas can cause significant surgical challenges. Alyssa’s cavernoma bled near her 6th and 7th cranial nerves, which affected her right eye and smile. Following her surgery, Alyssa’s right eye rotated in toward her nose, and she had facial paralysis, affecting her eyelid and ability to open and close her right eye. She underwent strabismus surgery to center her eye, and had weights put into her upper lid to help with the closure, but she was still unable to blink, leaving her right eyelid permanently open, day and night. This left her eye exposed to debris, sun, and wind, causing irritation and dryness, and risk of ongoing damage and pain. For two years, Alyssa used eye drops and serums constantly. She would go through a large box of drops in days. She and her family saw more than 10 doctors at various hospitals and in various states, looking for a better way to live. She [...]
