Fragile x syndrome

@MissAmie (720)
United States
January 28, 2009 4:32pm CST
How many of you parents out there have heard of this? Not many, I'm willing to bet. Did you know that Fragile X (also known as Martin Bell Syndrome) is the leading inherited cause of mental reatrdation? Did you know that it is linked to Autism? Did you know that as many as 1 in 200 women can be carriers of this and never even know it (like I never knew). It is my goal to educate everyone I come in contact with about this genetic disorder. It is so common, yet so unknown. It affects aproximately 1 in 4,000 males and 1 in 8,000 females. The symptoms are normally more severe in boys. Please take a moment to familiarize yourself with this syndrome. These kids look fairly normal, but developmentally they're far behind their peers. Please visit the following websites to educate yourself and see what you can do to help! www.fraxa.org http://ghr.nlm.nih.gov/condition=fragilexsyndrome
2 responses
• United States
29 Jan 09
Do you have any other information about this?? You may have solved a problem I have been having. I have both a Son and daughter with a learning problem of some sort. However we are on state insurance and they will not cover a DNA test. His doctor tried to send him for one and the insurance denied it since the main rerason to send him for one is that he is almost three and still can't talk. My son more than my daughter has several autistic like signs, ADD and extreme learning and speech delays. My daughter is over 19 months old now however and stillnot tlaking and shows some delays.
1 person likes this
@MissAmie (720)
• United States
30 Jan 09
I have a wealth of information on Fragile X. Feel free to message me. As a matter of fact, I'm going to try to add you as a friend right now. Message me! I'll happily share with you what I know!
@TLChimes (4845)
• United States
30 Jan 09
And call your states Early On program because the sooner the kids get help the better off they are. Check with the lab to see if there are programs to help pay for the testing. Also see if the diagnostic code can be changed for it and then the insurance may cover it. I did both to get my son's testing done.
@MissAmie (720)
• United States
30 Jan 09
YES! Good point! Here in Tennessee we have TEIS or tennessee early intervention somthing or the other. I'm pretty sure all states have them. I got my son started very early with them and I can see massive improvement. Getting hooked up with them did take a doctor's referral, but their services are totally free! Who doesn't like free help?
@ana31798 (41)
• United States
30 Jan 09
I had never heard of this condition before. Thanks for bringing it out to our attention. I went to the links you have up and it is very interesting.
@MissAmie (720)
• United States
30 Jan 09
Thank you for looking even though you are not personally affected by it. I just want to tell the whole world! I think I'm going to spend all day emailing Montel and Oprah and all those folks and see if I can get on their shows. This needs to be common knowledge!!