Fragile X and Chris Benoit

The tragic murder/suicide of pro wrestler Chris Benoit has brought Fragile X Syndrome into the news.  When a national story includes something like Fragile X, it is a huge opportunity to alert the public to the existence of a critically important piece of information that most Americans would otherwise never hear about. 

But when the media gets the information wrong, and then repeats it a hundred times over as it becomes part of the “myth” of the story, the opportunity is lost.  Worse yet, they firmly establish the myth in place of the truth.  Now, the struggle will be to undo the myth created by lazy reporting.  This happens in high profile criminal cases.  It happened to Fragile X Syndrome.  Misinformation about Fragile X can be found all over the internet (which is no doubt where the media found it).  Good information can be found here

Almost every story about Benoit states that Fragile X is a “rare disease.”  Not only is it not rare, but it is pervasive:  1 in 130 women are believed to be carriers of Fragile X (and this number is likely too low, since most females go undiagnosed because their symptoms are too subtle).  We are not talking about a handful of kids here, but a huge number of children going undiagnosed., with a huge cost of suffering and a very real cost of billions of dollars for schools, social services, medical and lost productivity.  We are throwing billions of dollars away because of our failure to recognize, diagnose and treat children with Fragile X Syndrome, and leaving children and their families to suffer for nothing.

Ignorance about Fragile X Syndrome is a national tragedy, and could have been changed has the reporters on the Benoit story worked just a little harder.  And then there’s autism.  While all over the news (with very little real information, I might add), nobody bothers to mention that Fragile X is the leading genetic cause of autism.  Don’t you think parents of autistic children need to know this?  The physicians don’t know it, so they can’t tell them. The media is clueless.  Somehow, people need to start to connect the dots if we’re ever going to deal intelligently with the issues that plague our children.  This was a great opportunity to do so, and it’s shame that it was lost.

Excellent information is readily available about Fragile X Syndrome at www.fraxa.org, the Fragile X Research Foundation, possibly the best run Foundation in this country.  Every parent of a child who demonstrates autistic symptoms should go there and read.  Every physician should study Fragile X and so that they can recognize it in their patients.  And everyone should send a donation to Fraxa to help their research to effectively treat and cure Fragile X Syndrome.  They are close to doing so, but are not there yet.  And consider the children who can be saved from needless suffering.  Not bad for such a “rare” disease.

One comment on “Fragile X and Chris Benoit

  1. FXS mom

    Thank you so much for posting this. It grates on my last nerve every time I hear that this is a rare disease because I don’t feel it is either.

    One day I did go through all the numbers and unfortunately to the governments standards it is rare. I was angry and I, for once, think they need to lower their standards!! The prevalence is so high!! I hope people do seek out accurate information because, as a parent, it’s already hard enough answering, “Fragile What?” Now we will have to correct people too.

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