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Turner Syndrome Support Group Born From WCCO Radio Broadcast

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(credit: CBS) Susan-Elizabeth Littlefield
Susan-Elizabeth Littlefield never imagined she'd be in the Tw...
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MINNEAPOLIS (WCCO) – Turner Syndrome is a disorder you’ve likely never heard of.

About one in 2,500 girls are born with it, and it prevents their bodies from maturing fully into women.

Young girls with Turner Syndrome often don’t go through puberty unless they get therapy. Most can never carry children, and as adults they are often shorter than 5-feet-tall.

A Bloomington woman with the chromosomal disorder started the first state support chapter in the country.

“As I was growing up, I was always the shortest one in my class, and I think I was always treated younger than my age,” said 51-year-old Julie Leon. “I was picked on a lot.”

The height chart card her mom saved shows how Leon was to develop.

“Ninety-nine percent of us have non-functioning ovaries and are infertile,” she said.

Her juvenile looks and major hearing loss were part of the disorder, which she didn’t know she had until she was a teenager.

Her mom, Jane Blom, says a 1979 WCCO Radio broadcast segment with a doctor explained what no one had been able to pinpoint.

“They were talking about Turner Syndrome, and I think within about three or four minutes of the description, I remember saying out loud to myself, ‘Julie has Turner Syndrome,'” Blom said.

Leon called it a revelation.

“It was a relief, a huge relief,” she said.

After suspicions were confirmed, on Leon’s 16th birthday, her mom didn’t give her driving advice, but another kind of talk.

“I said, ‘Julie, I know you always wanted to be a mom, but it can’t be, and I know that’s going to be hard,'” Blom said. “And it was hard, you don’t want to tell your daughter that.”

So, Leon adopted two babies, and Blom is now a grandmother with a story to tell that few have ever heard.

To join in on Leon’s Saturday fundraising walk, register here.

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