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Siouxlander shares life-long journey with Turner Syndrome

2/25/2022

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When you first meet Nicole Cleveland, you wouldn't think she has a rare medical condition.
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"So when they see me, they think oh, you're a normal human. There's nothing wrong. And I mean, that's a blessing in a way but also it's a curse because I do have days where I don't feel great." Cleveland has Turner Syndrome, a genetic condition that only impacts females and is considered rare.

"About 70,000 women are diagnosed or girls are diagnosed every year or have in the United States," Cleveland said.

Turner Syndrome can be diagnosed as early as birth as in Cleveland's case. Others can be diagnosed into the teen and young adult years.

"I have a very mild case of it, but I still have some health complications where I have thyroid issues and hypertension," she explained. "If you don't get diagnosed with it at an early age, it could have severe health consequences."

Turner Syndrome occurs when one of the X chromosomes is missing or slightly altered and can present in a variety of different medical or developmental ways.

"I was put on what's called growth hormone and that is to help achieve somewhat of a normal adult height," Cleveland shared. "I'm five-one. If I did not have it, I would probably have been maybe four foot five, very, very short thing."

Cleveland says she's lucky because she hasn't had any major medical issues from Turner Syndrome. And she thanks her parents and medical professionals who have helped educate her and her family from the start.

"And they prepared my parents with the tools to be an advocate for me," she said. "And as I got older, my parents informed me when I was old enough to understand what was wrong. They were able to turn me into my own advocate."

She is sharing her story with the hope of making Turner Syndrome more widely known, not just in the public but in the medical community, too.

"I have to become more of an advocate for those that have Turner Syndrome because I am able to be an advocate where some who have it," she explained. "Unfortunately, they may have a more severe case where they can't be an advocate for themselves. So I became that advocate."

Iowa Representative Randy Feenstra highlighted Turner Syndrome this month on the House floor, introducing the Protecting Girls with Turner Syndrome Act to criminalize the abortion of any baby diagnosed with Turner Syndrome.

To learn more about Turner Syndrome or to donate to research, visit turnersyndrome.org.

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