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Alexa Miller was diagnosed with MRKH in 2011.
Palm Coast Saturday, Sep. 1, 2012 6 years ago

Teen raises awareness for rare reproductive disorder

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by: Shanna Fortier Associate Editor

When Alexa Miller was nearing the end of puberty, she knew that something was different about her body. While all the other girls her age started menstruating, she was left waiting; until at 16, she was diagnosed with MRKH or Mayer-Rokitansky-Küster-Hauser Syndrome, a disorder that affects the female reproductive system.

The condition causes the cervix, vagina and uterus to be underdeveloped or absent.

“It was really hard to hear; I wanted to cry,” said Miller, remembering the day in 2011 that she heard the outcome of her MRI. “I think the hardest part for me was when I got my MRI they made it sound like it was all good, but when it was actually determined I wasn’t.”

Women with MRKH can also suffer from kidney abnormalities, hearing problems and skeletal abnormalities. One in about 5,000 women have the condition.

Miller first spoke openly about her condition during the 2011 Miss Flagler County Scholarship Pageant in front of a full audience. Now, almost two years after her diagnosis, the 17-year-old is ready to take a stand and be a support for other young girls who are struggling to come to terms with the same condition.

“It’s time for it to come out of the closet so to speak,’ said Alexa’s mom, Margarita. “(This condition) was kept as a secret, but there are millions of women out there who have it and can’t get pregnant. Our main goal is to bring it out in the open and have people ask questions.”

This summer, Alexa and her mother started a nonprofit 501(c)3, Embrace MRKH Foundation Inc., to help and support women with the rare disorder.

“Being diagnosed with MRKH, I know how it feels to think that you are different from everyone else and feel like there is something wrong with you,” Miller said. “With this disorder being so rare, it is difficult to find people to talk to that actually fully understand what you’re going through and how you feel. The foundation was created to let women with this disorder know that they are not alone and that many other girls around the world are going through the same struggles they are. (We) want to let every woman out there with this disorder know that they are no different, but they are unique.”

In addition to fellowship, Margarita Miller hopes that raising awareness of the condition will lead to early detection of the disorder.

“When you turn a certain age, you should have to be tested for it. ... It can be dangerous for girls who have it and try to be sexually active, ” she said. “But the only way to test it is to have an internal exam and MRI, if there is a problem.”

With a long-term goal of being able to give a scholarship to a young girl with this condition, the foundation will host its first event, a bowling tournament, Sept. 9, at Coquina Lanes.

“We bowled in a league when we first moved here — Alexa grew up in that bowling alley, so that seemed like the perfect place to start,” Margarita Miller said.

Sitting at the kitchen table fresh out of Matanzas High School cheerleading practice, Alexa Miller said: “It’s something I’ve gotten used to now that I know more about it. I don’t like that I have it, but it’s kind of like a weird type of blessing because I get to help other people — spread the word about it, and give other girls a chance to have somebody to talk to. You always have to find the positive.”

Follow Alexa Miller’s blog at Alexamillermrkh/tumblr.com.

If you go
What: The Embrace MRKH Foundation Bowling Tournament will raise funds for its scholarship program. Cost is $25 per person, $45 per couple and $100 for a team of five. There will be auctions, door prizes and a 50/50. Call 338-5070 to pre-register.
When: 1 p.m. Sept. 9
Where: Coquina Lanes, 11 Old Kings Road N.

 

 

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