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  1. #1
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    Default Help Needed! IVF PGD/CVS Testing for FSHD

    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

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    crispyz  (20-08-2016)

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    Hi Sarah,

    I work at FSHD Global Research in Sydney and happened to pass by your post. I know of someone who has done this through Monahs IVF in Brisbane. She and her husband chose an FSHD negative embryo for implantation.

    Because FSHD is “dominant” it’s possible to have two FSHD negative chromosomes, one from each parent, that pair on fertilization.

    If you are interested I can try and put you in contact with her, or another facility in Sydney. Feel free to contact us or visit our website www.fshdglobal.org.

    There are many people who have gone down a similar journey as you, so do not feel like you are alone

    Wish you all the best with your journey!

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    crispyz  (23-08-2016)

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    Just wanted to offer my support. I don't know anything about fshd but we had a long ttc journey with IVF and PGD so I understand your position. You are definitely not alone. Best of luck!!!

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    Thanks LittleDove and fshdglobal, its so nice to have a reply.

    fshdglobal, i will check out the website now! Any information you could pass one would be great. I hope I'm reading this correctly but its nice to hear that there is a possibility that one chromosome from each parent can be fshd negative as we had been told that my partners would always through up fshd positive..unless we confused the info given. Not sure if you can help with this but if fshd was passed on would it be the same severity as what the parent has?

    Thanks ladies again, I feel so happy that you both have responded! We are planning to start trying this year but this is always on my mind and i want to make sure we are doing the right thing.

    Sarah

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    Hi tarikakn

    The best thing you can do is talk to a genetic councillor, you will need a referral from your GP to do this. they will be able to explain all of the options available to you.

    SarahJane

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    Hi Tarikakn

    You need to talk to whoever diagnosed your FSHD they will be able to send you to the correct person if they cant help. From my understanding PGD testing is possible but you have to find an IVF clinic that can do the test you may be like us and none of the IVF clinics in your state do the test. The other option is to have CVS test at 12 weeks this test can tell you if your unborn child has FSHD or not. I hope that helps but its best for you to talk to the professionals.

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    Default Can talk if you like.

    My husband also has FSHD. We have three children. 2 through PGD/IVF in Sydney. PM me if you'd like any information.

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    crispyz  (20-08-2016)

  11. #8
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    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 have only seen your comment today and just tried to pm you but it would go through. Hoping your still around!

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    Default reply

    HI sarahjane. I'm new to this whole forum thing and it's driving me crazy! I can't PM you either. Would love to chat. Any ideas?

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    Quote Originally Posted by fshmum View Post
    HI sarahjane. I'm new to this whole forum thing and it's driving me crazy! I can't PM you either. Would love to chat. Any ideas?
    I think you need a minimum of 5 post to PM... Sorry, was reading the thread and had to comment.

    Good luck!


 

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