Neurofibromatosis type 1 (NF1) diagnosis fuels nurse educator’s passion for goal concordant care

Author: KIRSTIANN CLIFFORD, MD ANDERSON

Published On: 05/29/2024

Tori McClosky’s senior year of high school turned upside down when a tumor was found on her brain. The cause was neurofibromatosis type 1 (NF1), a genetic condition that causes tumors to grow on nerves in the brain and throughout the body.

“I went from planning prom and playing soccer to shaving my hair off and preparing for brain surgery,” she recalls. “It was shocking. I was living my life, and everything was great until I got this news that changed everything.”  

In the 20 years since then, McClosky moved from California to Texas, becoming both a nurse and a patient at MD Anderson. Her experiences have provided a unique perspective and fueled her passion for Goal Concordant Care.

Living and working with NF1

It’s not uncommon for people with NF1 to have tumor recurrences throughout their lifetime. That’s been the case for McClosky as well. She’s undergone three additional surgeries on her hip, spine and skin at MD Anderson – all while working as a clinical nurse and assistant nurse manager in the Breast Center. Read her full story here.