Disorders of sex development in Indonesia: The course of psychological development in late identified patients

Abstract

In individuals with a disorder of sex development (DSD), prenatal development into male or female has deviated. Consequently, the child is born with anomalies of the genital tract and may have ambiguous sex characteristics. In Western countries, identification and treatment of DSD are performed early in life. In Indonesia, the affected individuals sought medical help later in life, as adolescents or adults, because DSD is not widely known and often misperceived as transgender. Prior to the study, the patients had lived with ambiguous bodies and gender, little or no treatment for DSD, and without understanding about their condition. As studies in Western countries had been conducting among early treated patients, little was known about the course of psychological development in these late identified patients. This presentation will report the findings on gender development, sexuality, emotional or behavioral problems, stigmatization, and health-related quality of life in 118 Indonesian children, adolescents, and adult patients with DSD in comparison to their matched control subjects.