stackyFACTSHaving a rare disease means becoming an unwilling medical detective, fighting through an average of seven years and eight different specialists just to find a name for your suffering.
Having a rare disease means becoming an unwilling medical detective, fighting through an average of seven years and eight different specialists just to find a name for your suffering. Because conditions like Ehlers-Danlos syndrome present with scattered symptoms like joint dislocations and digestive failure, doctors frequently dismiss patients as anxious. By the time a geneticist spots the missing mutation, the psychological exhaustion is immense.
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