title: Young adults' experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study.
abstract: OBJECTIVE
  To describe young adults' experiences of living with recessive limb-girdle muscular dystrophy (LGMD2) from a salutogenic orientation.
  
  
  METHODS
  A qualitative explorative interview study, including 14 participants aged 20-30 years, was performed focusing on comprehensibility, manageability and meaningfulness in daily life. Content analysis was used for data analysis.
  
  
  RESULTS
  Living with LGMD2 not only implies learning to live with the disease and the variations between good and bad periods but also means trying to make sense of a progressive disease that brings uncertainty about future health, by striving to make the best of the situation. Disease progression involves practical and mental struggle, trying to maintain control over one's life despite vanished physical functions that require continual adjustments to the body. Restrictions in a double sense were described, not only due to the disease but also due to poor comprehension of the disease in society. Lack of knowledge about LGMD2 among professionals often results in having to fight for the support needed.
  
  
  CONCLUSIONS
  In order to manage daily life, it is important to be seen and understood as an individual in contacts with professionals and in society in general, to have informal social support and meaningful activities as well as access to personal assistance if necessary.
  
  
  CONCLUSIONS
  Recessive limb-girdle muscular dystrophy (LGMD2) is a group of progressive disorders, which manifest in physical and psychological consequences for the individual. According to the salutogenic orientation, people need to find life comprehensible, manageable and meaningful, i.e. to achieve a sense of coherence (SOC), but living with LGMD2 may recurrently challenge the individual's SOC. Through the holistic view of the individual's situation that the salutogenic orientation provides, professionals may support the individual to strengthen SOC and thereby facilitate the movement towards health.
authors.affiliation: a Department of Health and Caring Sciences , Linnaeus University , Växjö , Sweden .
authors.forename: Anna Carin
authors.initials: AC
authors.lastname: Aho
authors.affiliation: b Psychiatric Clinic, County Hospital , Ryhov, Jönköping , Sweden , and.
authors.forename: Sally
authors.initials: S
authors.lastname: Hultsjö
authors.affiliation: c Department of Social and Welfare Studies , Campus Norrköping, Linköping University , Linköping , Sweden.
authors.forename: Katarina
authors.initials: K
authors.lastname: Hjelm
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D018908:Muscle Weakness / Q000503:physiopathology*; D049288:Muscular Dystrophies, Limb-Girdle / Q000523:psychology*; D018802:Patient-Centered Care; D036301:Qualitative Research; D035583:Rare Diseases / Q000151:congenital*; D060685:Sense of Coherence; D012944:Social Support; D055815:Young Adult
keywords: Chronic diseases; LGMD2; muscular weakness; rare diseases