Etiology, Clinical Profile, Gender Identity and Long-Term Follow Up of Patients with Ambiguous Genitalia in India

Ammini, AC; Gupta, Renu; Kapoor, A; Karak, Asis Kumar; Kriplani, Alka; Gupta, Devendra K.; Kucheria, Kiran

doi:10.1515/jpem.2002.15.4.423

Cited by 31 publications

(21 citation statements)

References 26 publications

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“…5,6 In contrast, Ammini et al documented that 70% children presented after 5 years of age. 7 The varied age at presentation, in different geographic areas, could be due to socioeconomic, cultural and educational factors.…”

Section: Discussionmentioning

confidence: 99%

Pediatric disorders of sex development

et al. 2009

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The management of disorders of sexual differentiation (DSD) involves a multidisciplinary approach. The main aim of analysis was to study the phenotype-karyotype correlation in North Indian children with DSD. The records of pediatric DSD were retrieved and characteristics noted. Of total of 58 children, 43 (74.1%) and 10 (17.2%) were raised as males and females respectively. The mean age at presentation was 31.3+/-9 months. The karyotype was 46XY in 45 (77.6%) and 46XX in 12 (20.7%). CAH was commonest cause of DSD (36.2%), followed by gonadal dysgenesis. Of the 15 patients of 46 XY CAH, there were 5 with 17-alpha hydroxylase deficiency, 2 with 3-beta HSD deficiency and one case of lipoid adrenal hyperplasia. There was an excess of genetic males, possibly due to prevalent socio-cultural factors and gender bias favoring males. There is a need to improve the diagnostic facilities and incorporate a team approach in management of DSD.

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Section: Discussionmentioning

confidence: 99%

Pediatric disorders of sex development

et al. 2009

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“…It is an advance that so many centers are reporting long-term outcome data and the fact that these reports are not only from centers able to devote a high level of human and technical resources, but also from very poor countries with very different cultural beliefs and traditions [Ammini et at., 2002;Warne and Raza, 2008], is a great advance. It is clear that while outcomes in the technically advanced and better resourced countries are still far from perfect, they are dramatically better than in developing countries where services and medicines are in restricted supply, poverty and lack of education are widespread, and rumor and discrimination, based on ignorance, make people's lives a misery.…”

Section: Discussionmentioning

confidence: 99%

Long-Term Outcome of Disorders of Sex Development

Warne

2008

Sex Dev

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The management of disorders of sex development (DSD) has been a problem area for years, partly because clinicians have started to see that not all of their patients grow up to be happy adults content with the gender assigned to them at birth, and partly because of the vigorous activities of patient advocacy organizations who have publicized their unhappiness and disagreement about current practices to the world at large and to politicians in particular. Results from a large number of long-term outcome studies have been published in the last decade and this paper attempts to give an overview of what we now know and what we still do not know about how to obtain a good outcome for our patients. Many studies have focused on a particular disorder and there have been more about congenital adrenal hyperplasia and complete androgen insensitivity (CAIS) than any of the other conditions, even though mixed gonadal dysgenesis is probably more common than CAIS. This is because researchers have wanted to know about the effects of hormones on the brain. There have been studies from a number of different countries, and cultural differences come to the fore in disorders affecting sex and gender. Very few studies have been done in Africa or East Asia so far. Long-term outcome should be studied in every treatment center, but there is a great need for study instruments to be developed that would be robust enough to use in a range of different cultural settings and languages. The studies show that while many patients fare well and are leading productive lives, gender dysphoria has been underestimated in the past and that gender counseling as well as sexual counseling should be part of the multi-disciplinary service available to patients with DSD. More emphasis is also needed on strategies to prevent the development of germ cell cancers. Urological problems in both males and females with DSD have been underestimated and deserve more attention.

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“…Some of them are homosexual or transsexual individuals who join the group because their lifestyle is otherwise prohibited in the society. Some are boys who have been kidnapped and castrated [10]. Others may be normal men posing as hijras to earn a living, some of them may be actually street criminals or drug addicts who join the ranks, and some may actually be ambiguous genitalia patients, again not properly investigated or treated but mostly abducted or given to them by the parents.…”

Section: Rumour and Discriminationmentioning

confidence: 99%

Disorders of sex development (DSDs), their presentation and management in different cultures

Warne

Raza

2008

Rev Endocr Metab Disord

115

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The way disorders of sex development (DSD) are viewed and managed in different cultures varies widely. They are complex conditions and even well-educated lay people find them difficult to understand, but when families are very poor and lacking in basic education, and the health system is starved of resources, traditional beliefs, folk remedies and prejudice combine to make the lives of children and adults with DSD extremely difficult and sad. Rumour and discrimination isolate them from their communities and they become devalued. People with DSDs desire the same things in life as everyone else-to find someone who will love them, to be valued as human beings, to feel at home in their own bodies, to be able to have satisfactory sexual relations should these be desired, to be able to trust their medical advisers and to be integrated into the general community. Long term outcome studies have been published from many countries, but these studies have not necessarily been critical of the values that underpinned the type of treatment given to the patients. There is a need for standardized instruments that would allow a true comparison of the quality of outcomes from the patients' perspective. Much could be done to improve equity between rich and poor countries for the benefit of people with DSDs. A focus on developing cheap, robust diagnostic tests, making essential medicines available for all, training surgeons to do better operations, educating health professionals, families and the general community in order to break down prejudice against people with DSDs, and training mental health workers in this specialized field, would do much to alleviate the burden of the condition.

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Etiology, Clinical Profile, Gender Identity and Long-Term Follow Up of Patients with Ambiguous Genitalia in India

Cited by 31 publications

References 26 publications

Pediatric disorders of sex development

Pediatric disorders of sex development

Long-Term Outcome of Disorders of Sex Development

Disorders of sex development (DSDs), their presentation and management in different cultures

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