Endocrine Abstracts

Actual prevalence of DSD in India has not been determined. Child with DSD is a social emergency in our country. Parents and the extended family after a birth of a child are eager to know if it is a boy or a girl, the answer usually is not so straightforward. Establishing the diagnosis takes time and limited availability of clinical and laboratory expertise can be challenging in. Recognising that this baby needs specialist evaluation and is referred in time still does not always happen. Parents are many a times not willing to come forth with a child with atypical genitalia as it is felt that the child is probably a hijra, the child maybe taken away by members of that community. The next challenge is as to what should be the sex of rearing, In earlier times the sex of rearing was decided by the chromosomal sex or the extent of development of external genitalia, especially the phallus, so as the patient raised as a boy can void standing or can have successful sexual function and medical and surgical treatment was done accordingly. With the changing paradigm in the west, in our country state of Tamil Nadu has also brought out similar guidelines. This is extremely difficult in our country because of societal norms, the pressure and social stigmatization family is likely to face, literacy and understanding of the parents and religious beliefs and practices. Untreated children with atypical genitalia face social stigmatization likely to be bullied in school and society and an infertile girl is a big burden for the parents. All these cultural issues need to be addressed while managing children with DSD. Studies are limited but clearly show that parents of children with DSD want that the sex of rearing be decided as early as possible and surgery according to that should be done early. Grown up (>12 years) and adult patients with DSD also prefer that the sex was decided early on, feel that parents have a right to decide about their treatment and surgical interventions should be done in early childhood. Adult DSD have not shown major gender dysphoria.