Pediatrics

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How individuals with phenylketonuria experience their illness: an age-related qualitative study
Child: Care, Health, and Development, 09/09/09

Vegni E et al. – Forty–seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age–related PKU experience: a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range. This study constitutes a first attempt at understanding PKU from a non–medical–biological perspective.

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