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Growing up with narcolepsy

Consequences for adolescents and young adults

Mit Narkolepsie aufwachsen

Folgen für Jugendliche und junge Erwachsene

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Abstract

Background

Narcolepsy, 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 methods

Semistructured interviews with 9 adolescents and young adults with narcolepsy provided detailed descriptions of the topic as perceived by the participants.

Results

Narcolepsy 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.

Conclusion

Increased 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.

Zusammenfassung

Hintergrund

Narkolepsie, eine Erkrankung mit exzessiv erhöhter Tagesschläfrigkeit, beginnt oft im Jugendalter. Ziel dieser Studie ist es, die Bandbreite und die psychosozialen Auswirkungen von Narkolepsiesymptomen bei Jugendlichen aufzuzeigen.

Material und Methoden

Halbstrukturierte Interviews mit 9 Jugendlichen und jungen Erwachsenen mit Narkolepsie erlaubten eine detaillierte Beschreibung, wie das Thema von den Betroffenen erlebt wird.

Ergebnisse

Narkolepsiesymptome bei Jugendlichen zeigten eine hohe Variabilität und verschlimmerten sich häufig mit Beginn der Pubertät. Schlaf wurde meist als unerholsam beschrieben. Die häufig schweren psychosozialen Auswirkungen resultierten teilweise aufgrund verspäteter Diagnosestellung. Probleme in Schule und Ausbildung waren eine häufige Konsequenz, auch beeinflussten die Symptome das Erreichen von Lebenszielen. Oft wurden ein sozialer Rückzug und niedriges Selbstwertgefühl beschrieben. Die exzessive Schläfrigkeit erschwert sowohl das Nutzen öffentlicher Verkehrsmittel als auch das eigenständige Fahren und behindert daher eine unabhängige Mobilität.

Schlussfolgerung

Ein höherer Bekanntheitsgrad der Erkrankung und psychosoziale Unterstützung in Verbindung mit rechtzeitiger Diagnose und medikamentöser Behandlung sind dringend notwendig, um die häufig problematischen Folgen in Ausbildung und psychosozialem Befinden einschließlich eines erhöhten Risikos für Depressionen einzugrenzen.

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Acknowledgments

We thank the NODSS group, Melbourne, for invaluable help in recruiting the participants for this study.

Conflict of interest

The corresponding author states that there are no conflicts of interest.

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Authors and Affiliations

  1. School of Social Sciences and Psychology, Victoria University, P.O. Box 14428, 8001, Melbourne, Victoria, Australia

    R. Wehrle &  D. Bruck

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  1. R. Wehrle
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  2. D. Bruck
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Corresponding author

Correspondence to D. Bruck.

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Wehrle, R., Bruck, D. Growing up with narcolepsy. Somnologie 15, 32–38 (2011). https://doi.org/10.1007/s11818-011-0505-1

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