Thursday, July 21, 2011

Getting up on my soapbox. That sound you heard is my knees cracking.

Tomorrow (Friday, July 22) is Fragile X Awareness Day.

Do you know 130 women?  (Okay, you don't have to know them all really well....but I bet if you counted everyone you've met in the past, say, 2 years, plus everyone you used to know in college, and in past jobs, and in high school, and through other friends.....you could probably come up with 130 women, right?)

Which one do you think is a carrier of the Fragile X gene?

That's the latest estimate of how many women in the general population are carriers.

I know.  To a young woman who has yet to have children, it's not that impressive a number.  It wouldn't have meant that much to me, before I had kids and knew I was a carrier.  There are much bigger, much more common things to worry about when you are considering having babies, right?

Like Down Syndrome (1 in 365, for a 35 year old woman)
Or Cystic Fibrosis (1 in 3,000 Caucasian babies per year)
Or Duchenne muscular dystrophy (1 in 3,500 boys)
Or neural tube defects (including spina bifida) (1 in 1,000)

The incidence of Fragile X Syndrome is 1 in 3,600 to 4,000 boys and 1 in 4,000 to 6,000 girls.  Those numbers might not be impressive compared to the numbers for some of those listed above - unless you happen to be that 1 among 130 women.  Her chances are 1 in 2.  (Plus, the carrier gene can cause infertility.)

Now that's some crappy odds.  But it's better to know, than not to know.  Knowledge is power.  (Somebody famous and smart once said that.)

Autism rates have exploded.  That makes it so much more important to test for Fragile X, because they are so similar, and it's thought that Fragile X is often misdiagnosed as autism.

If you have a child with autism, please take a minute to review the symptoms of Fragile X and consider testing your child for it.  Knowledge is power.  If you know exactly what causes your child's autism, you can work with that!

And if you happen to already know that Fragile X is in your family tree somewhere and you aren't sure whether you could be a carrier, take the time to find out.  Don't wait until it just shows up in your kids, your grandkids, or your great grandkids, because as my friend at Basically FX said here.... it'll rip your heart out.


Please also take a couple seconds to "attend" the National Fragile X Awareness Day event on Facebook. The event is located HERE.  It's easy and costs nothing and you don't have to get dressed up and leave the comfort of your laptop to attend.

Here's where I got this information, in case you want to read up on it some more.
http://pregnancy.about.com/cs/downsyndrome/l/bldownssyn.htm
http://www.wrongdiagnosis.com/c/cf/basics.htm
http://kidshealth.org/parent/medical/bones/muscular_dystrophy.html#
http://www.sharecare.com/question/rate-incidence-neural-tube-defects
http://www.fragilex.org/pdf/PrevalenceWhitePaperAdaptedforFQ.pdf

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