When rare disease patients tell about their quest for a diagnosis, their stories resemble the ones of heroes seeking something valuable. Edmund Jessop, author of the article “The quest for diagnosis: a narrative analysis of patient journeys” published in the latest issue of Rare Diseases and Orphan Drugs Journal finds the common themes in their narratives.
Though supported by relatives, friends and doctors, patients tend to feel lonely during their search of diagnosis. They need much help and delicacy to go through their biggest ordeal – to learn the meaning of their suffering and its prognosis. Each story is a way to reveal the knowledge gained during their quest. The narratives range from regular descriptions to angry manifestos which demand changes in the healthcare system.
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