Disorders of sex development among Sudanese children: 5-year experience of a pediatric endocrinology clinic

Mohamed Ahmed Abdullah 1 , Umsalama Saeed 1 , Asjjad Abass 1 , Karib Lubna 1 , Arabi Weam 1 , Abdelbassit S. Ali 1  and Imad F. Elmwla 2
  • 1 Faculty of Medicine, Department of Pediatric Endocrinology, University of Khartoum, Khartoum, Sudan
  • 2 Faculty of Medical Laboratories, University of El Neilain, Khartoum, Sudan


Background: The birth of a child with disorders of sex development (DSDs) is considered a medical and psychosocial emergency. Management of these cases requires facilities and a multidisciplinary team. In developing countries, this is made difficult by the lack of facilities in addition to sociocultural and religious factors that can affect management. This is the first experience to be published from Sudan.

Objective: The aim of this study was to see the prevalence, etiological factors, management, and problems faced in handling these cases.

Methods: This is a retrospective descriptive study reviewing the records of all cases referred to a pediatric endocrinology clinic over a 5-year period. Cases were managed by a multidisciplinary team.

Results: One hundred fifty-six cases were seen, of which 122 were included in the study. A total of 79 (64.8%) were born at home, whereas 59 (52.2%) of the cases were not observed at birth by health-care providers. The average cost of investigating a case was $250–300. The investigations showed that 69 had XX DSD and 45 had XY DSD. The most common cause of XX DSD was congenital adrenal hyperplasia and that of XY DSD was androgen insensitivity syndrome. Twenty-three (19%) needed sex reassignment. There was a preference for the male sex.

Conclusion: DSDs are not uncommon in Sudan. Because of lack of awareness and sociocultural reasons cases are referred late. Investigating these cases is expensive and has to be supported, and more multidisciplinary teams have to be trained to make services accessible and affordable.

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The Journal of Pediatric Endocrinology and Metabolism (JPEM) is the only international journal dedicated exclusively to endocrinology in the neonatal, pediatric and adolescent age groups, and publishes the results of clinical investigations in pediatric endocrinology and basic research. JPEM publishes Review Articles, Original Research, Case Reports, Short Communications and Letters to the Editor.