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Fragile X

Laura Posted:

Fragile X

Has anyone heard of this?

Apparently during your first pregnancy (or at least mine) they test for this with regular routine bloodwork--which I had no clue and am really not happy with

well my dr called with gray results(meaning not positive and not negative) and I am trying to figure out what this all means.

I have found some info online but am trying to find stats on how many fall into this indeterminate category

Can anyone help?
Teri Posted:

Re: Fragile X

no, but I hope everything is okay

Victoria Posted:

Re: Fragile X

I have never heard of this or read about it in all my reading. Please let us know what you find and how you are doing. How are you feeling otherwise?

Emmasmom Posted:

Re: Fragile X

Fragile X is a genetic condition that affects mostly boys but can affect girls as well. It can cause a variety of disabilities ranging from learning disabilities to autism. As far as the genetics of it go, Im not able to explain exactly how it goes but I believe that it passes from mothers to sons and fathers to daughters but i could be wrong. But one parent must be a carrier of the gene for the child to have fragile x. I dont know anything about the test during pregnancy. I wasnt even aware that we get tested for it. I thought it was a test that the child gets if the parent is noticing delays as the child grows. I hope you can find out more information and if you do, could you share with us?

Laura Posted:

Re: Fragile X

hey found the gene in 91 so I guess some dr.s automatically started testing for it--not sure at all on that end since i didnt know I was being tested.

I h ave read about what happens once a baby is diagnosed but not about what happens when you are a carrier

Here is some info
Fragile X
Jeanene Posted:

Re: Fragile X

I had this test done and I am still awaiting my results. My understanding, from meeting with a genetic counseler, was that the test determines if I am a carrier. If I am a carrier, they can do futher testing on the amniotic fluid from my amnio to determine if my baby is affected.

I hope all is ok with you - I did not know that there could be a gray result with this test.
Laura Posted:

Re: Fragile X

I am so glad to have found someone who had the test-- are you by any chance Jewish? I am not but was told that they test Jewish people--which I am not so sure its true.

Did your OB do the test or a genetics counselor? I think the gray result was my dr's term--I think it was between normal and carrier which I have read is also called indeterminate

Good luck-- I wouldnt wish this feeling on anyone
jennjohn17 Posted:

Re: Fragile X

I kind of know how you feel. I was tested as a carrier of cystic fibrosis. When I found this out i couldnt believe it. Nobody in my family has ever had cystic fibrosis. DH had to go immediately to get blood work done to find out if he was also a carrier. If he was then there was a 50 50 chance our baby would have it. It was 10 days of pure hell waiting for his results. Somtimes i think its better if they dont tell you or test you for any of these things!!!

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