One Leading Cause of Intellectual Disabilities is “Fragile X”

By Adora Namigadde

A developmental disorder that doctors say is little known but very common — Fragile X.

It can often be confused for autism because the two have similar symptoms.

Three-year-old JJ Hoover has Fragile X — a condition doctors say is the leading cause of intellectual disabilities.

“It’s really common, so that’s the biggest reason I want people to know about it, because it’s a very common problem,” said Mackinaw Trail Pediatrics Pediatrician Joe Santangelo. “One in 5,000 means that there’s, you’re gonna run into someone in your lifetime who has this.”

The genetic disorder sets kids behind developmentally by it mutating a gene that helps with early childhood development.

Abby Hoover has three kids, and two — three and two years old — have Fragile X.

“(JJ) does not talk. He just learned how to walk last summer,” said Abby Hoover. “The potty training is not even there yet, but a lot of Fragile X kids it doesn’t come until later on in their life.”

It’s often confused with autism because many symptoms overlap.

Whereas Fragile X can be genetically tested, autism cannot be tested by blood.

The correct diagnosis can help curb problems down the road.

“There are specific medical problems that can come along with Fragile X,” Santangelo said. “For example, there’s a heart condition that can occur as you get older.”

There’s no specific treatment for Fragile X, so they try to discover and focus on what strengths children do have.

“There’s a wide range of how those kids turn out as they get older and as adults. Some people who have Fragile X syndrome have pretty significant intellectual disability. They may never get to live on their own and may always need to live with a parent.”

The range of possibilities gives Abby Hoover hope for her own children’s futures.

“I’ve heard a lot of good stories,” Hoover said. “Some kids go to college, some kids don’t. So I have very high hopes for him.”

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