| Full text | |
| Author(s): |
Lígia Z. C. Suzigan
[1]
;
Roberto B. Paiva e Silva
[2]
;
Sofia H. V. Lemos Marini
;
Maria Tereza M. Baptista
;
Gil Guerra Jr.
[5]
;
Luís Alberto Magna
[6]
;
Andréa T. Maciel Guerra
[7]
Total Authors: 7
|
| Affiliation: | [1] Universidade Estadual de Campinas. Faculdade de Ciências Médicas. Departamento de Pediatria
[2] Universidade Estadual de Campinas. Faculdade de Ciências Médicas
[5] Universidade Estadual de Campinas. Faculdade de Ciências Médicas. Departamento de Pediatria
[6] Universidade Estadual de Campinas. Faculdade de Ciências Médicas. Departamento de Genética Médica
[7] Universidade Estadual de Campinas. Faculdade de Ciências Médicas. Departamento de Genética Médica
Total Affiliations: 7
|
| Document type: | Journal article |
| Source: | Jornal de Pediatria; v. 80, n. 4, p. 309-314, 2004-08-00. |
| Abstract | |
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. (AU) | |