Fragile X Syndrome (FXS) Myth Buster Handout

We are pleased to announce the launch of the new FXS Myth Buster handouts recently published in AAP News, the monthly magazine of the American Academy of Pediatrics (AAP). Designed to address misperceptions about fragile X syndrome, one version of the FXS Myth Buster handout has myths and facts written for pediatricians, and a second version has these same myths and facts written for pediatricians to give to their patients’ families.

This project was developed as part of a collaboration between NCBDDD’s Division of Human Development and Disability (DHDD) and the American Academy of Pediatrics (AAP). DHDD and AAP developed two projects to address increasing awareness among pediatricians: the FXS Myth Buster handouts and a quality improvement project to develop tools to help pediatric clinics diagnose FXS. Through this work, DHDD’s collaboration with AAP is creating tools to help pediatricians decrease the length of time from suspecting developmental delay to getting the correct genetic test and determining the diagnosis of FXS.

Myth

There’s no reason for a FXS diagnosis if there’s no cure.

Fact

  • A diagnosis can also help you connect with support groups of other families in the same situation.
  • For families, having a diagnosis can help you find behavioral treatments[156 KB], medications[173 KB], and educational services which may help your child. A diagnosis can also help you connect with support groups of other families in the same situation.

What you can do

Partners and Policy makers: Help raise awareness of this complex condition by sharing the myth busters with healthcare professionals and parents. CDC has created an online quiz for both groups.

  • Partners and Policy makers: Help raise awareness of this complex condition by sharing the myth busters with healthcare professionals and parents.  CDC has created an online quiz for both groups.
  • Pediatricians: FXS may not be what you think it is. Consider reviewing AAP’s clinical guidance which calls for genetic testing and evaluation of all children with global developmental delays or intellectual disability of unknown origin.
  • Parents: If you’re concerned about your child’s development, talk to your child’s doctor. The sooner a child is diagnosed with FXS, the sooner he or she can start receiving the care and services they need.

For more information on this activity, please read the Web feature CDC and AAP Bust Fragile X Myths.

For an overview of CDCs work on fragile X syndrome, please read Fragile X Syndrome:  A Public Health Challenge.

 

%d bloggers like this: