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Bill to Raise Awareness of Turner Syndrome Sits in Committee

SPRINGFIELD, Mo. -- A bill in the Missouri House seeks to raise awareness for Turner Syndrome, a genetic disorder which many people don't know exists.
SPRINGFIELD, Mo. -- A bill in the Missouri House seeks to raise awareness for Turner Syndrome, a genetic disorder which many people don't know exists.

Turner Syndrome is the second most common genetic disorder.

It causes infertility, heart and kidney development issues, and can even cause infant death.

Connie McManus was diagnosed with Turner Syndrome at age 12.

"I wasn't developing, so my parents took me to Kansas City to an endocrinologist and they determined it from a genetic test," she said.

She was shorter and wasn't developing like other girls, which are two key symptoms of the genetic disorder.

Women with Turner Syndrome can also suffer from infertility and heart development issues.

But most babies with the syndrome don't make it to birth.

That was the case for Jacquelynde Gallant's daughter.

"We found out that we were having two girls and we were told to wait a second that there was something wrong with twin B," she said.

Doctors had found a heart defect in one of her babies.

"And that's when we did a test and found out she had Turner Syndrome," she said, "The valve that comes off the heart had a narrowing in it really close to the heart and she passed away at 24 weeks and two days."

While one in 2000 baby girls are born with the disorder, she believes not many people know about it.

"They know Downs Syndrome, but when you say Turner Syndrome not a lot of people know what that is," she said.

Both women support a new bill that would declare February "Turner Syndrome Awareness Month" in Missouri.

It's sponsored by Christian County Representative Kevin Elmer and is currently in a House committee.

They believe awareness could lead to earlier testing and treatment.

"More awareness, I think the younger that the girl is at diagnosis, I think that's really important to get treatment started right away," McManus said.

The next committee hearing for House Bill 1197 is Thursday, January 23.
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