Jeevan Mann

In sports, I was told I was too sensitive and that pain was just part of getting stronger. That pain was not imagined, it was the early sign of a connective tissue disorder slowly degrading my body. By high school, I was living with Arthritis, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and degeneration across multiple levels of my spine. What began as physical pain became something more disruptive. Spinal instability affected my mobility, my memory, and my ability to function day to day. I had to relearn how to move, how to study, and how to plan my life around uncertainty.

The shift from athlete and scholar to disabled was abrupt and disorienting. The tasks I once took for granted required constant adaptation. Yet even as my body became less reliable, I learned how to find ways forward, adjusting, persevering, and continuing despite what this condition has taken from me.

From the time I was a child, I can count on my hands the days I have lived without pain. I was repeatedly told nothing was wrong and that I needed to toughen up. Being diagnosed with a brain tumor, and later one of the rarest forms of Ehlers-Danlos syndrome, changed everything. It confirmed that my suffering was real and showed me how easily I could have been missed. I was diagnosed only because others advocated for me, and without them, I would have slipped through the cracks.

Spending time in a hospital bed, unsure if my life would continue, reshaped how I see medicine and myself. My condition forced me to grow resilient, observant, and driven. Experiencing firsthand the consequences of delayed and dismissive care defined my mission to fight for disabled rights and to advance research that brings earlier, more compassionate standards of care, to patients with rare diseases.