{"id":249934,"date":"2017-12-05T18:01:11","date_gmt":"2017-12-05T20:01:11","guid":{"rendered":"http:\/\/revistapesquisa.fapesp.br\/?p=249934\/"},"modified":"2017-12-05T19:06:16","modified_gmt":"2017-12-05T21:06:16","slug":"berenice-bilharinho-de-mendonca-the-hormone-drama","status":"publish","type":"post","link":"https:\/\/revistapesquisa.fapesp.br\/en\/berenice-bilharinho-de-mendonca-the-hormone-drama\/","title":{"rendered":"Berenice Bilharinho De Mendon\u00e7a: The hormone drama"},"content":{"rendered":"
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Eduardo Cesar<\/span><\/a> Physician would like to see the subject handled in a soap operaEduardo Cesar<\/span><\/p><\/div>\n

Many patients who consult with the team at the Endocrinology Department at the Hospital das Cl\u00ednicas of the University of S\u00e3o Paulo\u2019s School of Medicine (HC-FMUSP) have dramatic stories to tell. Due to hormonal imbalances occurring between the eighth and twelfth week of gestation, when sex is determined, many have lived as men although they are women \u2013 or vice versa. How a man or woman comes to be defined is not a simple matter. Most men have 44 body chromosomes and two different sex chromosomes (XY), but there are also men who have two identical sex chromosomes, XX. Most women have two identical X chromosomes, but there are also women who have two different sex chromosomes (XY), like men.<\/p>\n

Working in this area since 1975, endocrinologist Berenice Bilharinho de Mendon\u00e7a collected these stories as a researcher and established a reference center for diagnosis, treatment, surgery, and psychological support for patients with sexual development disorders, who are seen in clinics run by Elaine Frade Costa, Tania Bachega and Sorahia Domenice.<\/p>\n

The 67-year-old physician changed her work routine in 2017. She now spends two afternoons a week in an office at the Institute of Advanced Studies (IEA) on USP\u2019s campus in S\u00e3o Paulo with the goal of writing about genetically-linked sexual dysfunction to reach as many people as possible. Mendon\u00e7a\u2019s dream is to collaborate with creators of a television soap opera, the script for which she has already started to envision.<\/p>\n

What are you going to be doing at IEA?<\/strong>
\nMy plan is to write manuals to help guide health professionals, family members and even the children with atypical genitalia, who are neither completely male nor completely female owing to an error in their development. I am planning to write a book about sexual orientation for children with this problem and to visit different universities to discuss our experience on this topic. I am also going to use social media for this purpose. We need to learn how to normalize the handling of sexual development disorders, if nothing else because they are relatively common in the population. One in every 2500 live births involves a defect in external genitalia. My dream is to have a character \u2013 a child with atypical genitalia \u2013 on a television soap opera to reach a large audience and challenge the stigma associated with this by modeling a more natural approach to the problem, treating it like a heart or facial malformation, for example.<\/p>\n

What kind of plot would the soap opera have? <\/strong>
\nOne idea is to have a couple who have prenatal testing done to determine the baby\u2019s sex, and they discover that he is XY. So, he\u2019s a boy. Then the mother has an ultrasound and sees female genitalia. People who are completely androgen insensitive (these are male hormones), even though they have X and Y chromosomes, are women, and they have a completely female body, almost without body hair, since they have no male hormones. The only reason these women don\u2019t menstruate is that they don\u2019t have a uterus \u2013 during development, the testicles produce a hormone that turns the uterus inward — but they have a closed vagina, allowing for sexual activity after vaginal dilation. The program could portray the life of a woman in this situation, who can\u2019t get pregnant but who can have a normal sexual relationship and adopt a child. In the 1988 Olympic Games, the Spanish runner Maria Pati\u00f1o lost the medal she had won because at the time, athletes were given a karyotype test (chromosome set), and the result indicated that she was XY, like a man, even though she was a woman, feminine in every way, and derived no benefit from the male hormone testosterone. The medal was returned to her several years later.<\/p>\n

One character on the current soap opera at 9 pm on TV Globo, <\/strong>A for\u00e7a do querer [The power of desire], is going to come out as transsexual. In March, a four-part series on Fant\u00e1stico dealt with transgender people. And the GNT channel has a weekly show with stories of normal people who are trans. Although these are not the same scenarios you run into at work, does the fact that they deal with Disorders of Sexual Development (DSD) help to bring attention to sexual disorders in general, like those with a genetic basis? <\/strong>
\nThis character in the soap opera, given the description, is a transsexual man, who was born and registered as a female but who identifies as a male since childhood. My research is related to genetic and organic changes related to sexual development. Transsexualism is considered a psychological DSD. I would like to see a character with atypical genitalia who is treated appropriately, a situation that the media rarely depicts.<\/p>\n

What is life like for people with DSD? <\/strong>
\nIn general, patients with DSD live normal lives, but they must deal with very specific types of situations. We once worked with a patient who was completely androgen-insensitive, but her karyotype was XY. She had already had her testicles removed, which in these cases don\u2019t function and are internal, not external as in males. She had a normal relationship with her boyfriend, including sexual activity. She told her boyfriend that she could not have children because her uterus had not developed normally. But she didn\u2019t say anything about her karyotype, which denotes a person\u2019s set of chromosomes, because she was XY, while most women are XX. When they decided to live together, she decided to tell her boyfriend that she was XY, and he said that he couldn\u2019t tell the difference. She is a woman, and testosterone has no effect. Some patients are terrified of their karyotype; one asked me to burn the result, as if that would change anything. The karyotype alone means absolutely nothing. Most men are 46,XY [44 autosomal chromosomes and two sex chromosomes, X and Y], and women are 46,XX. But one in 25,000 women is 46,XY and one in 25,000 men is 46,XX.<\/p>\n

What is a male like when he is XX, with two sex chromosomes that are identical? <\/strong>
\nHe has a penis, testicles, a scrotum and a phallic urethra \u2013 it\u2019s all normal. But he also has gynecomastia, that is, he develops breast tissue during puberty, and he is infertile. One patient who was XX took five karyotype exams because he didn\u2019t believe the results. The man asks himself how he could have a female karyotype if he\u2019s a man. We have to change the language in these instances. I have a patient who is a young girl — 46,XX \u2013 who has ovaries, a uterus, and externally looks like a boy without testicles but with a phallic urethra. We changed her situation through reconstructive surgery of the female genitalia, and today she is a girl who is living normally.<\/p>\n