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July 2023

Fragile X Awareness

July marks National Fragile X Awareness Month, and July 22 is the 23rd National Fragile X Awareness Day. Did you know that Fragile X syndrome (FXS) is one of the most common causes of inherited intellectual disability? FXS is attributed to a change in the genetic material in every cell of the body, leading to challenges in producing a vital protein required for typical brain development and function. This may result in developmental delays, intellectual disabilities, learning and behavioral issues, distinctive facial features, low muscle tone, anxiety, attention-deficit/hyperactivity disorder, and/or autism spectrum disorder (ASD), among other problems.

FXS is more common (and more severe) in boys than girls, and it cannot be prevented from occurring. Despite the obstacles faced by individuals with Fragile X, researchers have discovered many common positive traits among people with FXS, noting their kindness, helpfulness, friendliness, sense of humor, adept imitation skills, and good visual and long-term memory. The life expectancy of individuals with FXS is generally unaffected, as there are typically no life-threatening health concerns associated with the condition.

Individuals with FXS are Xtraordinary! They can benefit significantly from person-centered planning, care management, and access to comprehensive services and support. At Care Design NY, we believe each of our members has the potential to live a quality life through the careful planning and delivery of physical, mental health, and support from natural supports and community resources.