Finding Strength in Fragile-X Syndrome in 2018

Fragile-X syndrome is a genetic disorder sharing features of autism

This boy shows some of the physical characteristics of Fragile X syndrome, including an elongated face and large, round protruding ears.
Source: Peter Saxxon, Wikimedia Commons

While autism receives a great deal of attention, a related disorder, Fragile-X syndrome, is less well known. To raise awareness and advocacy for the condition, the National Fragile-X Foundation has dedicated July 22 as Fragile-X Awareness Day, which this year falls on Sunday. Congress has officially declared this important awareness day. The organization already recognizes July as National Fragile X Awareness Month.

 

Fragile-X syndrome (FXS) is a genetic condition (involving the X chromosome) usually associated with intellectual disability. In nearly half of all children, the behavioral characteristics of FXS mirror those of autism and meet the same criteria for diagnosis. Examples include stereotyped behaviors, such as hand flapping, along with anxiety, social and emotional challenges, sensory challenges, disorganized speech, and ADHD. Boys are affected more often than girls and, in most cases, with greater severity. As with autism, there is no cure for FXS. However, students can benefit from special education services, such as Applied Behavior Analysis (ABA). In more severe cases, children with FXS will need to be taught daily-living skills, such as eating, sleeping, toileting, and hygiene. Because executive functioning (basic cognitive control) can be impaired, a daily planner can be an essential tool, whether this be in the form of a chart or a smartphone app (a form of basic assistive technology), of which there are several. Most important, these skills can be taught and learned. As with autism, children and adults thrive on routine; any changes can require a great deal of preparation, along with empathy and patience on the part of the caretaker. Taken together, these skills are critical for the success of anyone with FXS to live as independently as possible.

 

Fragile X Day 2018

This English boy shows some of the physical characteristics of Fragile-X syndrome. Photo by Peter Saxon, via Wikimedia Commons

Good to know about Fragile-X…

  • Fragile X syndrome is the most common inherited form of cognitive (intellectual) disability.
  • Although Fragile-X and autism have much in common, the main difference between the two is that the primary challenges of people with autism is social interaction and that of Fragile-X is intellectual function.
  • There is no cure for Fragile-X. However, there is hope for the future: gene therapy, gene activation, and FMRP replacement therapy someday may hold the answer for treatment or prevention.

 

This Sunday in New Jersey

New Jersey has two Awareness Walks this Sunday, July 22:

  • Northern/ Northwest area, 9:15 a.m., at Kittatinny Vallley State Park, Goodale Rd., Andover Township
  • Southern/ Shore area, 9:00 a.m., at the Belmar boardwalk.

RSVP to NewJersey@fragilex.org.

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