Wednesday, August 25, 2010

I'm a Woman with Male Chromosomes

I'm a Woman with Male Chromosomes
By Sophie Moura
Marie Claire

The year I was in fifth grade, I saw a television commercial for tampons. Like most 10-year-olds, I'd never heard of a tampon. But when I asked my mom what one was, she started crying.

How do you tell your daughter that she's never going to need tampons? That she won't get her period or have babies, and that those things are the least of what sets her apart?

From the outside, there was no sign that the little kid watching TV in a suburb of Pittsburgh was so different. I've always been girly — obsessed with dresses, sparkles, and the color pink, donning felt poodle skirts for Halloween and loving makeup.

What isn't obvious is that I have a rare condition called androgen insensitivity syndrome, or AIS. I was born with XY chromosomes, the combination found in boys. With AIS, an XY embryo doesn't respond to the crucial hormones that tell the penis and scrotum to form. At the earliest stage of life, my body missed those signals, and I developed as a girl, with a clitoris and vulva. But what's inside me doesn't match.

My parents learned this when I was 6. That year, I collapsed in the shower with a painful lump in my groin. Convinced I had a hernia, my parents, both doctors, rushed me to the hospital. But when surgeons operated (a hernia is tough to X-ray and needs to be fixed surgically), there was no twisted loop of intestine behind that bump. It was a testicle that had started descending. Across my abdomen, they found another one. The upper portion of my vagina, and my cervix, uterus, and fallopian tubes were missing.
[...]
That year, my sister came home from school with a biology project. Everyone in her class was assigned a condition to research, and she got AIS.

"Mom and Dad, it sounds a lot like Katie," she said at dinner one night. "And there's a woman with Mom's name on the support group website."
[...]
A month after that, we were holed up in his family's home near campus. I'd told two previous boyfriends about my AIS, so I launched into my usual spiel. Midway through, Sam stopped me — he already knew. A track teammate had approached him in the locker room after practice and said, "I heard you're dating Katie Baratz. Is it true she's really a guy?" Sam had known I'd tell him when I was ready.
[...]
Ultimately, I want to be an advocate for people like me. It's hard to convince doctors to change how they handle such cases if you're not their peer, so I'm in med school, and getting a master's in bioethics. I hope my degrees will give me street cred in the medical community, since this is what I'm meant to be doing. Talking about tampons doesn't have to lead to tears.
Read the whole article...its beautiful.

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