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Scenario

Why undiagnosed rare conditions challenge personal identity

Every specialist I see says my symptoms are interesting but they've never seen anything quite like it and I'm starting to feel like a medical curiosity rather than a person seeking help.

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More people experience this than they realize.

What we've seen

Being perpetually interesting to medicine while remaining unsolved transforms the self from patient to puzzle, eroding the sense of being fundamentally human.

Ideas that help explain it
Worth thinking about

“Where Are You with Rare and orphan conditions?”

If this sounds familiar, the Library can help you find the bigger picture.