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  1. #21
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    Quote Originally Posted by sarahjane914 View Post
    Hi Guys

    Not sure if there is anyone else out there that is going through the same thing as my fiancé and I, but I'm keen to find someone that is.

    My fiancé has a mild form of FSHD and we are wanting to start a family, Monash IVF and Melbourne IVF have both told us that they can't do PGD testing for that condition and our only option is to conceive naturally and then do CVS testing at 11 weeks and if positive for FSHD make the decision to continue or end the pregnancy. We have an appt with a genetic councillor an monash medical next week to discuss the process and to get our names in the system for when we need the test. We are wanting to start trying in the next few months.

    Just wondering is anyone has been in the same or a similar situation, could really do with some advise/words of wisdom. Thanks
    Hi Sarah:
    Thank you for this post.
    I know Genea in Sydney does IVF/PGD test for FSHD, not sure if you have tried them.
    Time flew since your first post, congratulations on having a healthy daughter! Really happy for ya and admire your bravery and strength! =)

  2. #22
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    Quote Originally Posted by crispyz View Post
    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!
    Hi Crispyz

    I did call Genea and they were the ones to tell me that they needed two samples. Give them a call, they were super helpful and took the time to talk to me in length.

    If you would like to pm me you can

    Good luck!

  3. #23
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    Thank you very much Sarah, trying to figure out how to PM you still. I need another 3 extra posts.

  4. #24
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    Hi Sarah and everyone:

    Thank you very much for your post and sharing your experiences, it helped me a great deal.

    I'm at the beginning of the PGD/IVF journey and wondering which FS I should see in Sydney for this particular condition. I'm pretty decided to go with Genea but not sure which fertility doctor will know a bit more about this.

    I also have a small problem, I seem to be the only one with the gene in the family. My parents did a blood test last year in Concord Hospital, the first time, the blood samples got lost, the second time the results weren't conclusive. I don't want to put them through it again, as it's actually a good outcome that they don't have it. But I'm wondering will PGD still work only with my blood sample?

    Can anyone also give me some recommendations for fertility specialist in Sydney?

    Thank you heaps!!


 

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