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The present research aimed to deeply understand patients' subjective experience with NPS, particularly the aspects of the syndrome that affect patients' adaptation and to propose interventions that can improve genetic and psychological counseling and help patients cope with their condition. Semi\u2010structured interviews of nine people diagnosed with NPS were analyzed using interpretative phenomenological analysis. Results highlighted attempts to look like a person without disabilities by hiding malformations and not telling the truth about symptoms' genetic origin because of patients' poor self\u2010esteem, negative self\u2010cognition, and social isolation experienced from childhood to adulthood. Difficulties of adaptation to physical limits and pain were also identified. The majority of participants who were not diagnosed at birth tended to consider physical symptoms as \u201cbirth malformations\u201d without imagining other potential implications until receiving a diagnosis. Despite the diagnosis, the majority continued to minimize the potential complications by considering NPS as a \u201cphysical difference\u201d and not adhering to medical surveillance.<\/jats:p>","DOI":"10.1002\/jgc4.1153","type":"journal-article","created":{"date-parts":[[2019,7,17]],"date-time":"2019-07-17T05:39:58Z","timestamp":1563341998000},"page":"1011-1020","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Difficulties adapting to Nail\u2010Patella syndrome: A qualitative study of patients' perspectives"],"prefix":"10.1002","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7079-7885","authenticated-orcid":false,"given":"Laura","family":"Geerts\u2010Crabb\u00e9","sequence":"first","affiliation":[{"name":"National Fund for Scientific Research (FRS\u2010FNRS) \u2013 T\u00e9l\u00e9vie Brussels Belgium"},{"name":"Center of Clinical Psychology, Psychopathology and Psychosomatic Research Free University 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