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Lampert Smith: Orchid ladies test gender perception
Dima Gavrysh -- Associated Press
On her talk show Friday, Oprah will discuss a physical condition: female, but with the XY chromosomes of the male gender.
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THU., SEP 20, 2007 - 5:22 PM
Lampert Smith: Orchid ladies test gender perception
Susan Lampert Smith
608-252-6121
Friday, Oprah will look out at her audience, and in her Oprah style, ask:

"Are you a male or a female?"

A simple question, right?

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The "orchid ladies," and other people born "intersex" know it's anything but simple.

"Sometimes I look in the mirror and wonder, who am I?" said Marcia, a 42-year-old Madison woman with delicate bones and curly brown hair.

She expects it will be surreal to see a national TV show talking openly about people born with her condition: female, but with the XY chromosomes of the male gender. A member of her support group, Katie, will be on Friday's show.

Marcia says the Oprah show is an important milestone in talking about a condition that caused so much shame that her family and doctor hid the truth from her. She didn't learn that she had XY chromosomes until she read her own medical records at age 35.

"I hope there will be other girls like me out there watching this and knowing they aren't alone,'' she said.

(A number of genetic conditions can cause as many as 1 in 4,500 babies to be born somewhere between the two sexes. Oprah's book of the month, "Middlesex,'' by Jeffrey Eugenides, has a lead character, Calliope, with a different intersex condition. Eugenides' word for it, hermaphrodite, is now looked on with disfavor.)

When Marcia was born in 1965 at St. Mary's Hospital, she was by all appearances a perfect baby girl, with all the external parts that girls are supposed to have.

But, inside, she was lacking a uterus and ovaries, and had internal testes, instead.

All developing fetuses have the capacity to develop either male or female organs, but in people like Marcia with "Androgen Insensitivity Syndrome" or AIS, the tissues don't respond to the male hormones and instead develop female. There an estimated 7,400 women with the condition in the United States.

In Marcia's case (but not in all) the condition runs in the family. I'm not using her full name because some family members aren't comfortable talking about it.

Frankly, no one was talking about it when she was growing up.

At age 12, she was given a genetic test, which revealed the XY chromosomes. Then, she had surgery to remove her internal testes, but she wasn't told the reason. All she knew was that she had had an operation and could never have babies. She would be on hormone replacement therapy the rest of her life.

And she was miserable.

"Growing up, I knew that I was different,'' she said. "I had to make up stories when my friends got their periods."

She said she always had low esteem. But she went to college, had a successful career, and has been happily married for 13 years.

Her husband knew she was infertile when they married, and was fine with that because he didn't want children, she said. He was also supportive, years later, when she accidently discovered the truth.

She saves her anger for the doctor who hid the truth from her for all those years.

Her saving grace was finding the AIS support group online at www.aissgusa.org.

There she meet other women who shared the condition, some of whom had also endured humiliating medical procedures and having their naked pictures — with their eyes blacked out — appear in medical journals.

She says she loves seeing teenage girls at the support meetings, knowing how much she could have benefited from them when she was growing up.

She also counsels younger women who contact the support group.

"Their first question is always, 'Are you married?'" she said. "They feel excited to know that a woman like them, with AIS, found someone to love and marry."

The women in the AIS support group call themselves "orchid ladies" because the surgery they had is called an orchidectomy. (The medical term for testes is orchids from the Greek "orkhis").

Also, Marcia said, "Because the orchid is the symbol of rare and beautiful women. ... Many orchids have roots that look like testes, and out of it grows a beautiful flower."

Marcia has never had gender confusion; she and most of the women in the group have always identified themselves as women.

Instead, the confusion is on the part of the rest of us, who think there's always a simple answer to the question: Boy or girl?

On TV

What: Oprah, on intersex people

When: 4 p.m. on WISC-TV3 or 4 p.m. on WISC-TV3

For more on the show: www2.oprah.com

For more on the intersex condition caused by AIS, see www.aissgusa.org


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