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Girls Without Periods

by Elizabeth Raucher

Periods—have you gotten yours yet? Have your friends? Most people think all girls get their periods eventually, but that’s not true.

My name is Elizabeth, and I have Turner syndrome (TS). Turner syndrome affects only women and girls, and happens when one of two X chromosomes is completely or partially missing. (Most girls have two X chromosomes, while boys have one X chromosome and one Y chromosome). Currently, Turner syndrome affects 60,000 girls and women in the United States. Girls with TS often have no sexual characteristics, such as breast development and menstrual periods. They’re also short. I expect to grow to 5 feet, which is quite tall for a girl with Turner syndrome.

Since I was 3, I’ve taken growth hormone shots every day to help me grow. I also take estrogen and progesterone daily so I can menstruate. I’ll continue to take them until I’m about 50, Taking hormones isn’t required, but my endocrinologist recommends it. One of the hardest things for me to accept is that I might never have biological children. But recent advances in medicine can help some women with Turner syndrome become pregnant if they want to.

Turner syndrome does have its perks, though, like getting to go to camp in Colorado for a week each summer. I started attending when I was 12 and can go until I’m 19. Beverly Daley, who works at the Children’s Hospital L.A., runs the camp. Girls with TS come to the camp from all over the country. Last year, we even had a girl from Germany attend! While we’re there, an endocrinologist and other guests speak to us about Turner syndrome. My favorite part of camp is salon day. Bev hires hair stylists to cut and highlight our hair. Then we have a party—singing karaoke and dancing! Camp is so helpful because I get to be around other girls who have Turner syndrome, and we can help each other.

There are also Turner syndrome conferences each year. When I was 9, I went to one in Washington, D.C. It was one of the highlights of my life. The other girls and I did so many fun things, like riding a trolley, touring the city, and seeing some cool monuments. There I met Suzanne, one of my best friends in the whole world. We still talk regularly on the phone.

You may think I’m unlucky to have this disorder, but I'm not. I’m still a normal girl, and I still love doing normal things. I go to school, study lots and spend as much time at the mall as Mom will allow. My friends know me as an obsessive Red Sox fan, a math hater, and a bookworm. I read a LOT, love Teen People, and makeup. Even though I go to the endocrinologist regularly, I’m not too upset because I miss SOME school, and I get to go out to lunch with my mom.

Sometimes doctors can tell if a baby has Turner syndrome by looking at an ultrasound before birth. Other times, doctors do a blood test for Turner syndrome if a girl develops late. It’s normal for girls to be all sizes and develop at different times. Many girls who don’t have Turner syndrome are short and don’t have their periods until their mid-teens.

Endocrinologist —a doctor who studies your hormones and glands.

Progesterone —a hormone made by the ovaries to maintain the uterus and promote breast growth.

Estrogen —a hormone that causes puberty and regulates menstruation.

© 2005 New Moon® Publishing, New Moon®: The Magazine for Girls and Their Dreams, Duluth MN.

 

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This article is from New Moon  , a magazine written for girls by girls. Here is a complete list of the New Moon articles on girlshealth.gov.

Content last reviewed May 15, 2008
Page last updated October 31, 2013

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