02/16/2026
This week, Dr. Tyra Banks and Dr. Michael Urban from Columbia University’s Occupational Therapy department invited me to join as a panelist for their OT Health Policy & Advocacy class. The focus of our discussion was lived experience with rare diseases. “For many of our students, encountering authentic voices is genuinely transformative. Hearing directly from someone navigating complex health systems helps illuminate the real human impacts of policy, access, and care, which often seed reflection and growth that extends well beyond the classroom.” I was joined by another young woman with a neuromuscular disorder and a mother whose daughter and husband have the same type of Muscular Dystrophy.
Students in this cohort are encouraged to walk with their rare disease families, providing continued support; amplifying their strength, not their disease; and serving the whole person. Our hope as panelists is that they carry our stories throughout their careers.
Below are some of the questions I was asked:
Q: Three words that describe your experience navigating healthcare
A: “Evolving”, “Frustrating”, and “Disappointing”
Q: What did the path to diagnosis look like for you (timeline, supports, barriers)
A: When we first noticed symptoms that could not be overlooked any longer, I was around age 14. My parents took me to the local MDA clinic in NJ, and the neurologist did an initial exam, suggesting I had Muscular Dystrophy, but not sure what kind. Fast forward 20+ years later when I was in a good place in my life to continue the diagnostic odyssey, I had additional genetic tests done. One genetic report picked up a gene (causative, variant), but with a VUS classification. After my parents were tested for this gene, my report was reclassified with a definitive, pathogenic diagnosis. The barriers I faced were cost and science.
Q: What was the most challenging part of getting a diagnosis?
A: I wouldn’t characterize this process as “challenging”. Rather, I went full force in educating myself. There was plenty of time spent researching what was foreign to me: genetics. I expanded my community too. I used this diagnosis as a power, not a deterrent.
