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Rite of Passage: Living with Chronic Pain

Kayla Furbish was 14 when she was diagnosed with Ehlers-Danlos syndrome (EDS), a rare, inherited connective tissue disorder caused by a defect in the structure or production of collagen or the proteins that interact with collagen.

Since then, Furbish (CAS’19) has had to deal with the daily joint dislocations, as well as gastrointestinal, cardiovascular, and neurological problems the syndrome causes. She’s undergone numerous surgeries, had infusions, and learned to live with chronic pain. Along the way, she’s had to give up a lot of things she used to do: tasks as simple as picking up a gallon of milk are now hard for her. And she says that because Ehlers-Danlos syndrome is outwardly invisible, she appears healthy even though she’s often sick and struggling to accomplish tasks most people take for granted. “I look just like everyone else,” she says. “I don’t have any outward differences that alert the public to my disability, and because of that, I often face judgment.”

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