[Turner syndrome: the patients' view].
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.


CONCLUSIONS
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.
Departamento de Pediatria, Facultade de Ciências Médicas, Universidade Estadual de Campinas (UNICAMP), Campinas, SP.
Lígia Z C
LZ
Suzigan
Roberto B
RB
Paiva e Silva
Sofia H V
SH
Lemos Marini
Maria Tereza M
MT
Baptista
Gil
G
Guerra
Luís Alberto
LA
Magna
Andréa T
AT
Maciel Guerra
D000293:Adolescent; D000328:Adult; D001827:Body Height; D005260:Female; D006801:Humans; D007247:Infertility, Female / Q000523:psychology; D007398:Interpersonal Relations; D012649:Self Concept; D014424:Turner Syndrome / Q000523:psychology*