Friday, September 30, 2011

October is Rett Syndrome Awareness Month


Do you know why
I have a purple porch light on my house?
And why I'm turning my page purple for the month?


It's to raise awareness about Rett Syndrome, because this is Rett Syndrome Awareness Month.
Rett syndrome is a disorder of the nervous system that leads to developmental reversals.

Rett syndrome occurs almost exclusively in girls and may be misdiagnosed as autism or cerebral palsy.

Studies have linked many Rett syndrome cases to a defect in a gene on the X chromosome. 

The condition affects about 1 out of 10,000 children.

Symptoms 

An infant with Rett syndrome usually has normal development for the first 6 - 18 months. Symptoms range from mild to severe.

Just some of the symptoms may include:
  • Apraxia (a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though the request or command is understood and they are willing to perform the task)
  • Breathing problems 
  • Change in development
  • Excessive saliva and drooling
  • Floppy arms and legs -- frequently the first sign
  • Intellectual disabilities and learning difficulties (assessing cognitive skills in those with Rett syndrome, however, is difficult because of the speech and hand motion abnormalities)
  • Shaky, unsteady, or stiff gait; or toe walking
  • Seizures
  • Loss of purposeful hand movements; for example, the grasp used to pick up small objects is replaced by repetitive hand motions like hand wringing or constant placement of hands in mouth
  • Loss of social engagement
  • Severe language development problems
This video from the View really tells you a lot about Rett Syndrome.


(If you don't see the video in your email, please click HERE)

Please consider making a donation to Rett Syndrome Research. The cure is within reach.

You can donate RIGHT NOW by going to Kelly's "strollathon" page, HERE. Kelly is my best friend Beth's daughter. She is a Rett Syndrome Angel, and she really needs a cure ... so even if you can only donate a dollar or two, make a donation for Kelly! Someday, with a cure, she may be able to thank you herself!

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