narcolepsy cataplexy support groups online

Acknowledge, and even validate, the social limitations and encourage social support and include these factors as part of the areas to measure the impact of current treatment.

Understand and address the priorities of the teens with narcolepsy they care for.

What is the main recommendation for providers treating adolescents with narcolepsy in terms of addressing the impact of narcolepsy on their social health? There was a limitation in feeling as though they could navigate activities the same as peers without narcolepsy and frequently had to compromise or prioritize activities. The overarching theme for both adolescents with narcolepsy and their parents is the balancing-fitting their life into a schedule dictated by narcolepsy symptoms. NeurologyLive® : What was the overarching theme of the study in terms of how narcolepsy affected adolescents' social lives?Īnne Marie Morse, DO: The 3 main domains addressed were mood, physical activities, and driving. She spoke about the themes addressed in the studies and what providers should do in helping to manage their patient’s narcolepsy to improve their life of social engagement with others. In a recent interview with NeurologyLive®, Anne Marie Morse, DO, pediatric neurologist and sleep medicine specialist at Geisinger Medical Center, to discuss more about the findings from both of these studies centered on the social relationship aspect that is impacted by adolescents’ sleep disorder. 1 In a similar recently published study from Davidson et al, 254 patients with narcolepsy between 18 and 39 years old were included, and all participants reported that narcolepsy made their social life more challenging. Recently, though, a few studies have been published in the Journal of Clinical Sleep Medicine assessing the impact that narcolepsy has on the social relationships of adolescents-including friendships and romantic and sexual relationships.įindings in one of those recently published studies from Zhou et al on social relationship health revealed an overarching theme that adolescents and their parents experience difficulty in trying to balance narcolepsy symptom management with meaningful social engagement. The existing literature in the field of sleep medicine is limited in providing insight into the social challenges that these patients can encounter. Adolescent patients with narcolepsy experience, such as excessive daytime sleepiness (EDS) and cataplexy, that have a significant effect on their social health during a critical social developmental period in their lives.

Narcolepsy cataplexy support groups online