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Tuesday, February 08, 2005

Don't decide my sex for me

Haaretz - Israel News
By Vivian Abu Raad

When `H.' was born, her male genitalia were underdeveloped, a syndrome known as intersex. When she was 11, the doctors decided to turn her into a woman. She hopes others can decide their gender for themselves.

"Congratulations, it's a girl," the parents were told. That was 30 years ago, and at the time, no one, not even the doctors, imagined that the newborn was not exactly a girl, that chromosomally, she was a boy, born with underdeveloped male and female genitalia

H. was born to an Arab family from the center of the country that raised her as a girl. When she was two, her mother noticed that her daughter's genitalia were different from those of all the other little girls and took her to the doctor to be examined.

"Your daughter is not exactly a girl or a boy," the doctors told H's concerned parents. An X-ray, they explained, showed internal testicles inside the abdomen. The parents did not know what to do with the diagnosis.

"My mother cried a great deal and went into a deep depression," recalls H. "They did not understand how it was possible to be neither a girl nor a boy. So what was I? At meetings with doctors, Mother always asked the same question: Was I a girl or boy?"

The doctors referred H. to a hospital in the north that treats similar cases, and there she began a long series of treatments and tests that lasted 18 years. H. had to go there with her parents once a month for intrusive and often humiliating tests.

"They would undress me, measure my sex organs and sometimes take photographs," recalls H. "I felt unprotected. I didn't understand when I was supposed to get undressed and who was allowed to undress me. For the doctors I was an intriguing phenomenon, which everyone wanted to see and touch. I recall one examination when I lay naked on a bed in the emergency room, with lots of doctors all around, all looking and touching. One kept saying, `I don't feel any testicles.' But I didn't understand."

The phenomenon that aroused such interest is called intersex, which means "between sexes." According to Professor Ze'ev Hochberg, an endocrinologist at Meyer's Children's Hospital, Rambam Medical Center, Haifa, H. suffered from a genetic syndrome that affects the enzyme responsible for turning testosterone into dihydrotestosterone (DHT), which is responsible for the development and growth of the male genitalia in the male fetus. Because H., while still in the uterus, lacked DHT, her male genitalia were not formed, which is why everyone thought she was a girl when she was born.

This phenomenon was already known in ancient Greece, which called such individuals "hermaphrodites," from the names of two gods - Hermes, a male and Aphrodite, a female. Nevertheless, because it is such a rare phenomenon, the doctors did not immediately realize what was involved when H. was born.

Today, says Hochberg, there are four large families in the world that carry the gene for the syndrome, but that marriage within the extended family increases the risk of having a child with the syndrome. In Israel, marriage among cousins is relatively prevalent among Muslims, and consequently, there are more cases of hermaphrodites among Muslims than among Jews or Christians.


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