Neha (mastipari) wrote in fragile_x,
Neha
mastipari
fragile_x

Hi!

Hi Everyone!


My name is Neha and my younger brother has fragile x.
I have yet to be tested to find out if I am a carrier or not, but I am hoping that this summer I will be able to finally get that done.

I found something that I thought might help spark the community a bit.

This is from postsecret.

I have never have seen a more true secret.

=)
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I did not get tested until I was 20. My brother was diagnosed when he was 10 and I was 7. I was doing fine in school, so my parents did not see the need to have me tested until I wanted to. I know I would get it done eventually, but I just got sick of telling me I didn't know, so I finally got it done. I am not a carrier and my repeats are 21 and 31. It was a relief to get the results back. I had to wait a few weeks.
what do those numbers mean? I'm 20 right now and I am planning on getting tested as soon as the semester is over. I don't even know what to say to get the test! =/
Here's the first page about testing on the National Fragile X Foundation's website.
http://www.fragilex.org/html/guidelines.htm
http://www.fragilex.org/html/diagnosis.htm
Look at both these websites. They should be helpful for you as you move forward with the testing.
Repeats numbers are the amount of times that CGG is repeated in your DNA. Mine being so low mean I am not a carrier of Fragile X.
i was tested when i was 16. it can really be something to deal with, although i think it's a little easier when you're a teenager because you're not really thinking about things like kids yet. i am a carrier, by the way, and i'm now 27 and married. thankfully my husband has been amazing about it. good luck :)
I know that I will be able to love a child with fragile x, I just get scared that my significant other won't be able to understand. I have never had a boyfriend who has been able to handle my brother, so it doesn't give me much hope for the future! I know that there are guys out there that will be able to understand but I think that it would be a lot to deal with a child with fragile x and be a guardian to an adult with fragile x.