Entries in Intersex (3)


Intersex Experts Question Safety of 'Normalizing' Drug

Courtesy Janet Green(NEW YORK) -- Janet Green was born with congenital adrenal hyperplasia, a condition that is one of 36 disorders of sexual development, leaving her with ambiguous genitalia, or intersex.

During the earliest weeks of conception in her mother's womb, Green was bathed in an overproduction of male hormones that caused a masculinization of her body and brain.

Girls with the condition can have clitorises as large as small penises or labia that look like a scrotum, but the internal sex organs are normal.

"I remember people being concerned about my body and a discomfort talking about it," Green, now a 55-year-old real estate agent from New York, said of her grueling medical journey.  "I just wanted to be normal and fit in."

Standard treatment is surgery, which can be painful and leave psychological scars.  But since the 1980s, doctors have prescribed a powerful steroid off-label for pregnant mothers who are at risk for the condition.

Now, in a report published this month in the Journal of Bioethical Inquiry, researchers call for more investigation into the use of that drug, dexamethasone, which they say is potentially unsafe.

The drug is approved by the Food and Drug Administration for the treatment of inflammation, certain forms of arthritis and some cancers.  But off-label, dexamethasone is used to reduce rates of typically boy-like chararteristics, lesbianism and bisexuality in girls -- characteristics clinicians have termed "behavioral masculinization."

There are no requirements by the FDA for off-label use.

Only one in eight children conceived by at-risk parents ever gets any potential benefit from the drug, according to the report, and it has never been scientifically tested in controlled clinical trials.

"Women don't even know it's experimental," said Alice Dreger, lead author of the report and professor of clinical medical humanities and bioethics at Northwestern University in Chicago.

Just this year, a Swedish study on dexamethasone reported nearly 20 percent of the children exposed to the drug had a "serious adverse event," including anxiety and mood disorders and problems with memory and verbal processing.

"There is a lot of exposure with little benefit and a fair amount of risk," said Green, who is now a patient advocate as interim executive director of the Accord Alliance in Whitehouse Station, N.J.  "To me, that's a scary thing.  Over time, a lot of things have been done to girls that are experimental and this is another one."

Bioethicists have sounded the alarm because, they say, doctors are bypassing the strict regulations and ethical protocol of clinical trials by offering the drug off-label, then recruiting the same patients for federally funded follow-up studies.

Mothers were told the therapy was "safe for mother and child," Green said, but there has been no scientific evidence.  "Until we get decent studies we can't answer what are the side effects."

Copyright 2012 ABC News Radio


Man Admitted to Hospital for Kidney Stone, Discovers He’s a Woman

iStockphoto/Thinkstock(NEW YORK) -- A Colorado man who was admitted to the hospital for a kidney stone received surprising news when the nurse came back with test results revealing he was actually a woman.

Denver photographer Steve Crecelius said he’s felt a little different all his life.

“When I was about 6-years-old, I started having these feminine feelings, but that was in the ’60s.  Wearing my mom’s makeup, I thought I looked pretty,” Crecelius told ABC News.

So when he went to the emergency room five years ago, he wasn’t too shocked when the nurse told him she found traits of both genders in his ultrasound results.

He was intersex, meaning he had both male genitalia and internal female sex organs.

“The nurse is reading the ultrasound and says, ‘Huh, this says you’re a female,’ Crecelius said.  “It was very liberating.  I had spent so much energy after the age of 13 constantly evaluating how people looked at me and acted towards me.”

Steve, who now goes by “Stevie,” said his wife and their six children accepted his new identity right away.

“We told them individually.  Some were in person and some weren’t,” Crecelius said.  “Every one of them said, ‘We don’t care one way or the other.  We love you for who you are and you’re still my dad.’”

Crecelius and his wife, Debbie, have been together for 25 years and she’s supported him every step of the way, including taking him to buy his first bra.

She told Crecelius, “You know, when I first saw you, I said to myself,  ’He runs like a girl.’”

“I think we were pretty good when she began to mourn the loss of her husband,” Crecelius said.  “We worked through what we needed to.  The concept of unconditional love is a larger story.”

According to the Intersex Society of North America, more than 1,500 children a year are born intersex.

For Crecelius, he hopes he can be an advocate for those born intersex and same-sex couples.

“I think of bullying, because I haven’t heard anyone talk about this.  It’s important to talk about,” Crecelius said.  “People need to be accepting and understand.  I was born this way, and loving each other and supporting each other will always be the main factor in our household.”

Copyright 2012 ABC News Radio


Intersex Babies: Boy or Girl and Who Decides?

Jupiterimages/Thinkstock(NEW YORK) -- An estimated one in 2,000 children born each year are neither boy nor girl -- they are intersex, part of a group of about 60 conditions that fall under the diagnosis of disorders of sexual development (DSD).

Once called hermaphrodites, from the handsome Greek god who had dual sexuality, they are now known as intersex.

Standard medical treatment has been to look at the genitals, determine the gender and then correct it surgically.

But now, many are challenging the ethical basis of surgery, knowing that gender identity is complex, and doctors can sometimes get it wrong, not knowing how a child will feel about their gender assignment when they grow up.

Advocates argue that surgery is irreversible and can have tragic consequences. In some surgeries on virilized girls with ambiguous genitalia, removing sensitive tissue and vessels can ultimately rob them of sexual sensation as adults.

As little as a decade ago, the medical community thought of gender as a slate that could be erased and then redrawn. Today, gender identification is still not well understood, but experts say that when sex cannot be determined, it's better to use the best available information to assign gender, then to wait and monitor the child's psychological and physical development before undertaking surgery, if at all. Waiting until puberty also allows the child to participate in the decision.

"Our chromosomes don't tell us who we are," said Dr. Arlene Baratz, a Pittsburgh breast radiologist who has two intersex daughters. "We expect XX is pink and a girl and XY is blue and a boy, but we know from children with gender identity conditions that is not always the case, even when their bodies are perfectly typical."

Anne Tamar-Mattis, executive director of Advocates for Informed Choice, worries about the legal side of this complicated issue, especially when it involves sterilization without a child's consent.

"We don't weigh in on what medical decisions people should make," she said. "We weigh in on children's rights. If the decision involves sterilization, the child has a right to court over sight."

And when parents are making these complex decisions to remove the child's reproductive organs, they must be fully informed. Often, they are not, she said.

Katrina Karkazis, senior research scholar at Stanford's Center for Biomedical Ethics and author of Fixing Sex: Intersex, Medical Authority and Lived Experience, agrees that "the child can't speak for him or herself."

The number of children who don't accept their gender assignment is small, according to Karkazis. "What's missing is these families and kids don't get the appropriate social and psychological support."

She recommends that doctors "check in" with the child over his or her life span and "find out what they are feeling."

Copyright 2011 ABC News Radio

ABC News Radio