julie flygare is a writer, runner, and yogi living with narcolepsy. many people with narcolepsy and their families find that support groups and online forums provide valuable opportunities to share experiences and advice. narcolepsy presents unique challenges that can affect many aspects of daily life.
the good news is that narcolepsy is a manageable condition, and nearly everyone with narcolepsy can lead a fulfilling life. managing impacts people with narcolepsy and their friends and family can work together to help manage the impacts of narcolepsy on day-to-day living. for someone with narcolepsy, it may help to: finding support many people with narcolepsy find it invaluable to educate themselves about the disorder as well as learn from others and share experiences. websites, online forums, local support groups, and conferences are great places for people with narcolepsy, their partners, family, and friends to improve their understanding of narcolepsy, share tips, and find support.
psychosocial functioning is particularly poor.” previous research has shown that people with narcolepsy have two- to four times the rate of psychiatric comorbidities and that health-related stigma is a predictor of depression and poor functioning, said dr. ong, a psychologist with the center for circadian and sleep medicine at the northwestern university feinberg school of medicine, chicago. in an effort to assess current practices for addressing the psychosocial needs of persons with narcolepsy and to identify potential strategies that could be used to develop a psychosocial intervention, he and his associates conducted a mixed methods study to examine how narcolepsy symptoms impact health-related quality of life and the appropriateness of different health-related quality of life measures for the disorder. most of the study participants (93%) were female, 90% were white, their mean age was 31, and their mean time since narcolepsy diagnosis was 4.3 years. overall, there was nice congruence across these measures.” on the sf-36, the researchers observed that there were deficits in physical and emotional aspects of role limitations, and in energy/fatigue.
as a result, we found a lot of negative impact on self-esteem and self-efficacy. one person said, ‘i get tired trying to explain why i’m tired.’” another common theme that emerged was the challenge of optimal treatment for their narcolepsy. it did seem to reduce rapport and the ability to trust their therapist. “they prefer a team approach with a clinician who’s knowledgeable about both sleep and mental health.” dr. ong acknowledged certain limitations of the study, including its small sample size and the fact that it was not adequately powered to detect differences between type 1 and type 2 narcolepsy.
deleterious implications on education, recreation, driving, sexual life, and personality are associated with the disease with a consequent negative psychosocial the results showed that the subjects had significantly lower median scores on all eight domains of the sf-36 than normative data, and scored particularly poorly narcolepsy can present challenges to daily living: in addition to sleepiness, people with narcolepsy may experience mental fogginess, poor memory,, related conditions, related conditions, symptoms of narcolepsy, narcolepsy in real life, narcolepsy stories.
people with narcolepsy experience substantially lower health-related quality of life when compared with the general population norms of the usa, uk, france and norway, as well as compared with people with chronic diseases such as multiple sclerosis, diabetes, hypertension and epilepsy. san antonio – narcolepsy adversely impacts one’s health-related quality of life in a variety of ways, from elevated levels of depression to quality of life is a multidimensional construct involving subjective well-being, health, and welfare. for the patient with narcolepsy, patients with narcolepsy are less physically active than healthy subjects and less engaged in interpersonal activities due to fatigue and lack of energy (avis, causes of secondary narcolepsy, narcolepsy sleep chart, being a doctor with narcolepsy, what is it like to have narcolepsy, narcolepsy checklist, bad narcolepsy days, narcolepsy afternoon, living with narcolepsy type 2, narcolepsy long naps, narcolepsy diagnosis story.
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