July is the 21st annual National Fragile X Awareness Month. According to the National Fragile X Foundation, “Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics. It is also a cause of autism spectrum disorder.”
National Fragile X Awareness Month educates the public about FXS and calls attention to the need for more research about the syndrome. Research about FXS is critical not only for the people who have the syndrome, but also because such research could also provide valuable clues to effective treatments and cures for disorders such as ASD, Alzheimer’s disease and other brain disorders.
FXS affects both males and females but occurs more frequently in males, who are usually impacted more gravely. Estimates provided by the National Fragile X Foundation tell us that 1 in 3,600 to 4,000 males have FXS while 1 in 4,000 to 6,000 females have the syndrome.
People with Fragile X syndrome live normal life spans as FXS does not cause life-threatening medical challenges. Some individuals with FXS, however, may also be affected by connective tissue concerns such as “ear infections, flat feet, high arched palate, double-jointed fingers and hyper-flexible joints,” according to the National Fragile X Foundation. Likewise, many share distinctive physical characteristics including “large ears, long face, soft skin and large testicles (called “macroorchidism”) in post-pubertal males.”
Individuals with FXS may share behavioral features including ones commonly associated with ADHD and ASD. These may include social anxiety; hand-biting and flapping; sensory integration disorders; poor eye contact; and the tendency for aggressive behavior.
Yet, these individuals are also known for their cheerful dispositions, notes the foundation. They are generally “very social and friendly; have excellent imitation skills; strong visual memory/long-term memory; are kind and thoughtful and like to help others; and have wonderful senses of humor.”
How can you support individuals with FXS this month? The National Fragile X Foundation recommends initiating and/or taking part in any of the following awareness activities:
1. Displaying “July is Fragile X Awareness Month” yard signs on your lawn
2. Displaying “July is Fragile X Awareness Month” posters in store windows, schools and other community meeting places
3. Posting educational information and personal stories about people living with FXS online
4. Sharing videos and information posted by the National Fragile X Foundation on your social media accounts
5. Hosting or joining X Strides 2021, a virtual walk/run fundraiser to support the National Fragile X Foundation on July 31.
To learn more about FXS, visit the Fragile X National Foundation’s website; and order the Fragile X Associated Disorders Handbook for Families, Healthcare Providers, Counselors and Educators.
To register for X Strides 2021, click here.