Jeanne Nollman was a later bloomer.

She waited and waited for puberty to hit, and when she was 17 and still nothing had happened, she got tested - and found out she had a rare condition called Swyer syndrome and would need supplemental hormones.

What no one told her until eight years later, when she demanded more information about her condition, was that she had the male X-Y chromosome pattern.

"That was typical back then, in the '70s," said Nollman, who is now 51 and lives in San Leandro with her husband and two adopted teenage children. "I guess they thought I might go jump off a roof and commit suicide with this information. But I must be an odd duck because I was just relieved."

Now she's trying to help other children - and their parents - learn about and even embrace their "disorder of sex differentiation," or DSD, which is the medical term for hermaphrodite, a word that is no longer used by doctors and patients.

The Bay Area is getting its first DSD parent support group next week, with a meeting Thursday at UCSF. Organizers, including Nollman, hope the group will become a resource for families to talk openly about the unique problems that come with raising kids who have sex development disorders.

Such disorders, which may occur in as many as 1 in 3,000 births, include a wide variety of conditions, from something that's not obvious at birth, like Swyer syndrome, to babies born with ambiguous genitalia who cannot immediately be labeled male or female.

Support emerges

People with such disorders often describe themselves as intersex, and support groups for intersex children and families are starting up around the country.

"Now when we have a new baby diagnosed, this parent will have a place to go, instead of just hearing from those of us who aren't living the experience," said Angelique Champeau, a nurse practitioner who helped create the disorders of sexual differentiation clinic at UCSF.

The culture around sex development disorders - both socially and medically - has changed dramatically in the past decade, and certainly since Nollman was a child. Surgeries to "fix" an infant's genitals soon after birth, while still relatively common, are being questioned much more often as more is known about gender identity.

Entire medical teams have been developed around these disorders; both UCSF and Stanford have started programs in the past five years to provide more nuanced care to newborns and older children. Often child psychiatrists are brought in soon after birth to discuss with parents some of the issues around performing genital surgery on babies and how to deal with gender issues that will likely arise as kids grow up.

"The idea that psychosocial care would be important, the idea that we would not automatically do genital surgery for every kid, the idea that you may not get gender assignment right, and that's OK - all of this is understood now," said Katrina Karkazis, a senior research scholar at Stanford's Center for Biomedical Ethics, who is helping build the DSD program there.

A shift in strategies

Some of the shift in treatment strategies is a result of an improved understanding of gender identity. Decades ago, it was thought that what a child looked like from the outside, and how she or he was raised, would define his or her gender, or at least kick-start it. That was the main reason "corrective" surgery was so common.

But over time, cases emerged of children who'd had their genitals altered at birth, and who later rejected the gender they were assigned. They were angry and frustrated, both at what had been done to them when they were too young to have a say, and often, at not being told the truth about their birth to begin with.

Parents, meanwhile, were burdened with a heavy dose of guilt - often because they felt they'd made the wrong gender decision for their child.

Those are still problems parents and children face, DSD experts say. But at least now people are aware of the potential troubles ahead, and less likely to make rash decisions based on superficial sex characteristics.

"You can gender-assign without doing any genital surgery. Someone can have a gender no matter what the genitals look like," Karkazis said. "But this took years to get across to people."

Still, there's no doubt a heavy stigma is still attached to sex development disorder diagnoses, experts said. When Karkazis meets with new parents of intersex children, she said she emphasizes that the child isn't "unusual or freakish."

"We want to focus on the beautiful child they have," she said. "We tell them that this child is going to have a fantastic life."

Helping people cope

Nollman hopes that's the message parents get out of the support group starting this week.

While social acceptance and medical care have improved dramatically since she was a child, Nollman knows firsthand that there is still a long way to go. She was featured on a short television show last year, and the comments people made online after it aired were mostly cruel.

"People are going to say negative things, and how does a family cope with that and get past it?" Nollman said. "Because of the shame and secrecy that surrounds this, parents often don't get the support they need for themselves or their children. I hope we can provide them with a supportive atmosphere, so they can help their child be healthy and strong."