科研之友
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摘要
objective: to identify how patients with turner syndrome perceive their condition. methods: thirty-six women with turner syndrome, aged between 15 and 25 years and with over 2 years of medical follow-up, were individually interviewed about: the impact of turner syndrome at the moment of the diagnosis, their understanding of the syndrome, its effect in their lives, and their expectations for the future. results: only 31% of the patients immediately understood the diagnosis. their feelings associated to that moment were neutral (47%) or concerned (33%). about one third of the interviewed women were unable to explain the etiology of turner syndrome (42%), did not relate their symptoms with turner syndrome (36%), and/or believe there might be a cure for it (44%). although most of the interviewed women affirm that the syndrome has no interference in their lives (67%) and that they consider themselves happy persons (78%), in more than half of the interviews there are evidences of difficulties in social interaction and love relationship, low self-esteem, dissatisfaction with their physical appearances, especially the short stature and infertility. their hopes for the future refer mainly to study and have a job. although being, on average, 19 years old, one in two women (53%) still hopes to grow up. conclusion: besides medical treatment, it is important that the knowledge of the patients about the syndrome and some issues as infertility, short stature, self-esteem and social interactions receive proper and continuous attention from the moment of the diagnosis. the ideal situation should be a joint-action of a psychologist and the medical team.
