Jaclyn Schultz has all the qualities of a pageant contestant: intelligence, beauty, charisma and talent (she was a Polish dancer for nine years). But the Miss Michigan 2013 winner is missing one thing her Miss USA competitors have: a uterus.
The 24 year old from Wyandotte, Mich., has Mayer-Rokitansky-Küster-Hauser syndrome. Named after the four physicians who discovered the syndrome, MRKH is a congenital condition in which females are born without a uterus. About 1 in 4,500 women - or 75,000 women in the United States - have the syndrome. While the main symptom is the failure to menstruate, some women with MRKH have abnormally formed kidneys or a single kidney that may be located in an unusual part of the abdominal cavity. Other signs include skeletal abnormalities, hearing loss or heart defects, according to the Beautiful Your MRKH Foundation, a nonprofit started by two women with the syndrome in July 2012 that has since become a support group for women across the world.
Schultz found out she had MRKH at age 16 when she went to the doctor, concerned that she hadn't started menstruation. "Since I was always in sports growing up, I was always really thin and tall - I'm 6 foot - so they thought it was just because I didn't have enough body fat to start my period," she explains.
Doctors then took an ultrasound and couldn't figure out what they were seeing - or rather, not seeing. After the test, one doctor asked Schultz's mother, Susan, if her daughter had undergone a hysterectomy. "I said, 'I beg your pardon?' And he said, 'Your daughter needs some further evaluation because I don't know what I'm looking at,' " Susan Schultz recently told a Detroit TV station.
"That time in my life was really hard because hearing a doctor say, 'Well, we don't know why you don't have a uterus. We don't know what it's called and how to put a name on it,' it's really isolating, and it's scary and it causes anxiety," Schultz says. "That's just a hard time for teenage girls anyway, so to hear that, it's tough."
Medical experts have not been able to define the cause of MRKH, though some speculate that genetics plays a role. Women with the condition are genetically female with two X chromosomes, and they develop normal external genitalia, functional ovaries and eggs. However, they are unable to carry children during pregnancy, and some women struggle emotionally to accept this fact following a diagnosis. Women can have biological children with the help of assisted reproductive therapies - like employing a surrogate - and Schultz points out that there's always the option to adopt, which she may do in the future.
After being diagnosed and keeping the condition to herself for most of high school, Schultz started talking about it when she attended Central Michigan University, where she studied public relations. Now a spokeswoman for the Beautiful You MRKH Foundation, she's not afraid to tell the world she doesn't have a uterus. "I'm coming out with it because it's really nothing to be ashamed about, and that's the whole thing with MRKH girls and women, is that it's not talked about," she says. "So it puts this stigma on it that it's a bad thing, and it's not a bad thing."
Before getting involved with the Beautiful You MRKH Foundation about seven months ago, Schultz says she hadn't spoken to anyone like her without a uterus. Now, women from Ireland to Australia have reached out and thanked her for sharing her story.
"It's been a little overwhelming and really humbling to know I'm giving the girls a little inspiration to know that they're not alone," she says.
Schultz, who hadn't participated in pageants before Miss Michigan 2013, will compete in Miss USA on June 16 in Las Vegas. Her Miss USA contestant profile page includes information about MRKH, but she says she probably won't bring it up during the pageant unless the "opportunity presents itself."
- Disease & Medical Conditions