Disorders of Sex Development (DSD)

Disorders of Sex Differentiation (DSD) are misunderstood in Palestinian society, so its management is a huge challenge from a medical, surgical and psychological standpoint. Although this case is rare, in the last three years Hadassah has treated more than 20 boys and girls with a variety of complex conditions, most of which require surgical intervention. Puberty is a complex time of transition – physically and emotionally. This complexity is compounded if the changes don’t fit a normal gender pattern. They are compounded even further if the gender development is happening in a society that is not geared to accept or address them.

Case Study: Asma

For Asma* a 15 year old Palestinian girl living on the West Bank, her puberty was definitely not running to an expected script. Her voice was deepening and she had excessive body hair. The situation was a source of extreme embarrassment and anxiety, for her and her parents. This was the situation presented to Project Rozana’s Clinical Advisory Committee in Israel when Asma’s case was referred to it recently. Asma’s family doctor had taken her case to a Palestinian Authority (PA) endocrinologist who had trained at Hadassah Hospital under its Head of Paediatric Endocrinology, Professor David Zangen. Tests subsequently revealed that Asma was born with a rare genotype androgen insensitivity syndrome. In effect she is genetically male and an ultrasound revealed that she had testicles in her abdominal cavity.

Significantly for Asma, in 2014 Hadassah created a multidisciplinary DSD team under Dr Guy Hidas. It was comprised of specialists from disciplines involved in gender identity, including a paediatric urologist, gynaecologist, paediatric endocrinologist, genetic specialist and a child psychologist. The team was immediately recalled to consider Asma’s situation.

We don’t have enough words to thank the team. When you meet doctors like these at Hadassah, they become a family. They did something very special for us. We also appreciate their absolute discretion. Everyone should know that if they encounter such a serious problem, Hadassah has someone to take care of them.”

Compounding any decision to act is the lack of funding from the PA for procedures like this. The family also has to contend with the shame and isolation that can result if their situation is revealed publicly. So they chose to seek support independently of the PA. Without a referral from the PA Health Ministry the procedure is not covered if undertaken in an Israeli hospital. Asma’s father said:

*Name changed for anonymity.

Disorders of Sex Differentiation (DSD) Appeal

Disorders of Sex Differentiation (DSD) are misunderstood in Palestinian society, so its management is a huge challenge from a medical, surgical and psychological standpoint.

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