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by The Fabulous War Horse of Overthinkers. . 238 reads.

National Fragile X Awareness Day

July 22nd is recognized each year by the US government as National Fragile X Awareness Day. While very few people know about FX, it is actually very likely someone you know could be affected by it, knowingly or not.

Fragile X is a mutation of the FMR1 gene that is linked to a few different conditions. Those with the full mutation have Fragile X Syndrome (FXS), and can experience a range of intellectual, behavioral, and developmental challenges. People with the FX premutation may have Fragile X-associated tremor/ataxia syndrome (FXTAS) or Fragile X-associated primary ovarian inefficiency (FXPOI). This dispatch focuses primarily on FXS.

This is a personal thing for me, as I have spent the last 14 years helping care for my brother with FXS. Every experience is different, of course, and FX affects different people to different degrees. But just taking a moment to educate yourself on it means a lot to someone with FX or who has a loved one with FX.

People with FXS tend to face a number of intellectual and social difficulties, including but not limited to ADD/ADHD, social anxiety, and sensory issues. In addition, FXS is frequently codiagnosed with autism, though no definite link has been established. Those with FXS but not diagnosed with ASD may still exhibit similar behaviors and face similar challenges. About 1 in every 3600-4000 men and 1 in 4000-6000 women have FXS. However, roughly 1 in 151 women carry the FX premutation, as do 1 in 468 men.

FXS has no effect on life expectancy. A genetic test is available that is 99% accurate, but there is no way to tell how many cases go undiagnosed. There is no cure for FXS, but with the help of therapy, education, and support, anyone with FXS can live a long and fulfilled life. They are often smart, attentive, and a joy to be around.

So, here's what you can do to help. Educate yourself on FX and help spread awareness. If you or someone in your family have shown symptoms of the premutation, consider getting tested. Most importantly, however, support those in your community who have FXS and their loved ones. Having FXS doesn't mean someone is "dumb" or "less functional" or otherwise "less of a person", but inconsiderate or uneducated people may treat them that way. Be patient and do your best to listen and understand. Just doing that can mean more than you know.

For a more complete overview of FXS and other FX-related conditions, I highly recommend the National Fragile X Foundation's website (Linkfragilex.org). The NFXF is dedicated to research, awareness, and support for people with FX and their families. You can also reach out to me with questions via telegram and I will answer as best I can.

Thank you for reading! And a big thanks to TWP for giving me a platform to speak out. 

Cheers,
OT

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