Age 6...

Growing up, I faced the world with a mix of clumsiness and resilience. My mom, convinced I was just accident-prone—especially after two back-to-back broken arms—decided to enroll me in karate. She hoped it would improve my self-awareness and balance. Ironically, I never got hurt in karate; instead, it taught me grace, tenacity, and the ability to carry the weight of my struggles.

At just 7 or 8 years old, during a visit to UMass Children's Orthopedics, I first heard the term "Ehlers-Danlos Syndrome." Tragically, that was also the last time it was mentioned. Despite my myriad health challenges growing up, no doctor connected the dots. It wasn’t until 2019, during a desperate search for answers as my health rapidly declined, that I revisited this diagnosis. Although it was brought up occasionally, I believed it only affected my joints and mobility. What I didn’t realize was that hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder that impacts the entire body.

It's bizarre to reflect on my experiences; at age 13, when debilitating migraines first struck, not a single medical professional made the connection to my underlying condition. Migraines became the first beast I battled, paving the way for the complex journey that would follow.

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