Growing up with narcolepsy : Consequences for adolescents and young adults (Originalien)

BackgroundNarcolepsy, a disorder of excessive daytime sleepiness, often has its major onset in adolescence. The aim of the present study was to focus on the scope and psychosocial impact of narcolepsy symptoms in adolescence.Materials and methodsSemistructured interviews with 9 adolescents and young adults with narcolepsy provided detailed descriptions of the topic as perceived by the participants.ResultsNarcolepsy symptoms in adolescence varied and often worsened at puberty onset. Sleep may be experienced as unrefreshing. The widespread and often severe psychosocial effects partially arose from a delay in diagnosis. Severe educational failure was a common consequence. Symptoms affected work and life goals. Increased social withdrawal and lower self esteem were often evident. Sleepiness was a problem both for public transportation and driving, substantially affecting independent mobility.ConclusionIncreased awareness of the disease and the provision of psychoeducational support, in conjunction with early diagnosis and medical treatment, are strongly warranted to prevent the most common educational and psychosocial problems, including risk of depression.