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Wakaba’s Society is a group consisting of girls/ women with Turner syndrome and their families living in Tokyo and its suburb area. It has been nine years since the society was founded. In July 2005, the number of families totaled 124: 7 subjects aged from 0 to 6 yr, 19 from 7 to 12 yr, 22 from 13 to 18 yr, 60 aged over 19 yr, and 20 supporting members. Many parents are deeply worried about such problems as when, by whom and how their children should be informed of the fact they have Turner syndrome. Since the children feel something is wrong with themselves, some lose confidence in their parents because they don’t tell them anything, and as a result both parents and children become distressed themselves. Taking this situation into consideration, we carried out an investigation into how the parents and the Turner subjects dealt with the difficulty of informing Turner subjects of the medical condition at the end of 2003. In Japan people tend to use the Japanese word kokuchi (=disclosure), but we prefer using the word setsumei (=inform) because hearing the word kokuchi make us think of severer diseases such as cancer.

Questionnaire about Informing Turner Girls of the Medical Condition