Tuesday, October 15, 2013

Rett Syndrome Awareness Month

October is a busy month for awareness!  There are so many that I may not be able to get to all the ones I was hoping to post about.  But hopefully I can at least provide a few resources for each one.  This month is Rett Syndrome Awareness Month!  In the last few years I have had the opportunity to work with just a handful of sweet little girls who have Rett syndrome.  I feel like it is a syndrome that far too many don't know enough about, even therapists working with these little ones!  Some quick facts about Rett Syndrome summarized from The International Rett Syndrome Foundation:
  • It occurs in 1 out of every 10,000 births.
  • A developmental disorder mostly seen in females, and rarely seen in males.
  • It is caused by a mutation on the X chromosome.
  • Many used to refer to Rett syndrome as a degenerative disorder, but it is not. It is a neurological disorder.
  • Symptoms don't usually occur until after 10+ months of normal development.  Once symptoms set in, there is a halt in development or even a regression.  During this time, girls begin "hand washing/wringing" and have motor/gait problems.  Delays in communication occur and seizures may also begin.  
  • Problems or delays with communication, swallowing, motor, sensory, social/emotional skills, and breathing often occur.
  • It is diagnosed by a simple blood test.
  • Current research shows that Rett syndrome is a potentially reversible disorder.  Girl Power 2 Cure has a nice summary of current research.
 The International Rett Syndrome Foundation has some great ways to help raise awareness!  This year everyone is encouraged to "Paint the town purple!" for Rett syndrome.  So paint those nails or break out all your purple apparel to help raise awareness.  

This is a sweet, wonderful video about a little girl, Oaklynn, that I used to work with.  Her mother is amazing and is so involved in spreading awareness.  I wanted to share her video because I think she does a great job of explaining Rett syndrome.  You can read more about Rett syndrome or Oaklynn at 
My Silent Angel's Fight.

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