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Defining Moment

Wendy Wagner sits with the three young patients who helped her identify her own diagnosis of hypermobile Ehlers Danlos syndrome.

Listen to an audio version of this column, voiced by the author.

My parents marveled at my "adorable" foot braces to fix feet that turned inward at birth. My bendy body was recruited for the local circus because it could twist in such entertaining ways. Ribs dislocated after a car accident took 10 years to find their way back home where they belonged.

I thought, "I guess I'm just unlucky."

My right shoulder popped out during the state finals of a record-setting high school swimming competition. My left shoulder popped out during the state finals of a championship high school water polo game. On a tiny ski hill, my ACL snapped.

I thought, "I guess I'm just unlucky."

My jaw dislocated and locked up on my wedding day — how would I smile or talk? I spent time in a wheelchair during pregnancy due to a sacroiliac joint that slipped out of position. My stomach slowed to a stop once, putting me in the hospital for weeks until it woke up.

I thought, "I guess I'm just unlucky."

I couldn't stand in a line without feeling dizzy, I lost my vision when I stood up quickly, and I had constant underlying nausea. My ankles would forget how to be ankles walking down the stairs, or even walking down the street. Stitches never held, and wounds dehisced. My hands and wrists required splinting to write, type, sleep, or drive.

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