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  1. #11
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    Thanks @lileitak
    @fshmum not sure, post 3 more comments lol ??

    Aargh so annoying

  2. #12
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    @fshmum are you still around, would really love to talk to you.

  3. #13
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    Ok I'll try 3 more posts

  4. #14
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    Then I can pm you

  5. #15
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    Drumroll please.....

  6. #16
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    Just tried to message you and it didn't work, can I have your email? I swear I'm legit lol

  7. #17
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    Default Any info most welcome

    Hi,

    I am a carrier of FSH MD and i have just found out from my genetic counsellor that no lab in Australia will do CVS testing. Did you end up going the PGD route?

    Thanks

  8. #18
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    Quote Originally Posted by Cbr85 View Post
    Hi,

    I am a carrier of FSH MD and i have just found out from my genetic counsellor that no lab in Australia will do CVS testing. Did you end up going the PGD route?

    Thanks
    Hi, apologies for the delay in responding I only saw your message today.

    That's correct, when we were looking into we were told that the sample would have to be sent to the uk for testing and would take up to 2 weeks for results.

    Once I feel pregnant, our feelings changed and we couldn't go ahead with it all. So we didn't do the cvs test.

    We couldn't do ivf with Pgd testing as in order to make the test they needed samples from two family member that have fshd and my DH is the only known person in the family to have it so that rules ivf out.

    We now have a 7 months old little girl next to me who is perfect, we don't know if she has fshd and am not sure if we will test her or not.

    My DH's condition is very mild and he lives a full happy life.

    Are you ttc?

  9. #19
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    Hi,

    Firstly, congratulations!

    My genetic counsellor was great and found a lab in Australia to develop a cvs test for us, we had to get a blood sample sent over from my parents in the uk, they also took a blood sample from my fiance and I. From there they were able to isolate the pattern of the fshd gene. We will start ttc in a few months and will use the cvs test. Im a bit nervous about the emotional stress of it, however having had many discussions with my fiance, we have decided that it is the best route, without having to go through PGD.

  10. #20
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    Default Thanks fshmum

    Quote Originally Posted by fshmum View Post
    My husband also has FSHD. We have three children. 2 through PGD/IVF in Sydney. PM me if you'd like any information.
    Hi:

    I came across this forum as I was searching the internet for pregnancies with FSHD. I'm so glad I stumbled across this post.

    I'm wondering if I could ask you about your experience with IVF/PGD. I have the FSHD condition myself and thinking of doing the PDG testing through Genea in Sydney. I'm the only known carrier in the family and when my parents got tested, the results were inconclusive. I also read later in this thread, PGD will require at least two blood samples in order to proceed, is that true?

    Hope to hear from you. Thanks heaps!


 

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