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PGD for Huntington's

JTurco710JTurco710
in Trouble TTC
Hello all!  My husband is at risk for Huntington's Disease, so we will be beginning IVF with PGD this summer.  I was wondering if anyone else here has any experience with this process.  It is so weird that we will not be told how many embryos we have, monitors will be turned away from us during sonograms...etc....I am just looking for some advice from someone who has been there before!
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Re: PGD for Huntington's

  • ChicagoWeded2007ChicagoWeded2007 member

    Hi and welcome!

    I have never done IVF, but why aren't you told how many embryos you have? What's that about?


    Be kind, for everyone you meet is fighting a hard battle. -Philo
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    Baby N conceived after 1 miscarriage and more than 2 years of TTC. Diagnosis was low sperm count. We found success after 3 months of anastrozole to increase DH's testosterone and one IUI.
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  • JennPierogJennPierog member
    imageChicagoWeded2007:

    Hi and welcome!

    I have never done IVF, but why aren't you told how many embryos you have? What's that about?

    Huntington disease (HD) is an adult onset disorder involving progressive motor disability, cognitive decline, and personality changes. Because this is an autosomal dominant condition, a person with a parent with HD has about a 50% risk of developing HD. Many couples want to prevent having a child that will develop HD, but do not want to face the decision of prenatal testing and possible pregnancy interruption. Often, individuals do not know if they have HD when they are family planning because the average age of onset of clinical symptoms is 40 years old. These couples may want to prevent having a child with HD, but not know if they carry the HD gene. Non-Disclosing PGD for HD can help these couples decrease the chance of conceiving a pregnancy with HD while not identifying the HD status of the couple.





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  • ChicagoWeded2007ChicagoWeded2007 member
    imageJennPierog:
    imageChicagoWeded2007:

    Hi and welcome!

    I have never done IVF, but why aren't you told how many embryos you have? What's that about?

    Huntington disease (HD) is an adult onset disorder involving progressive motor disability, cognitive decline, and personality changes. Because this is an autosomal dominant condition, a person with a parent with HD has about a 50% risk of developing HD. Many couples want to prevent having a child that will develop HD, but do not want to face the decision of prenatal testing and possible pregnancy interruption. Often, individuals do not know if they have HD when they are family planning because the average age of onset of clinical symptoms is 40 years old. These couples may want to prevent having a child with HD, but not know if they carry the HD gene. Non-Disclosing PGD for HD can help these couples decrease the chance of conceiving a pregnancy with HD while not identifying the HD status of the couple.
    Thanks for the info! Sorry, OP, I don't know anyone else going through this. Hopefully you find someone to talk to. Welcome to the board and good luck with your IVF!

    Be kind, for everyone you meet is fighting a hard battle. -Philo
    image


    Baby N conceived after 1 miscarriage and more than 2 years of TTC. Diagnosis was low sperm count. We found success after 3 months of anastrozole to increase DH's testosterone and one IUI.
    Some charts AlternaTickers - Cool, free Web tickers
    image

    I'm stupid. You're smart. I was wrong. You were right. You're the best. I'm the worst. You're very good-looking. I'm not attractive. - Happy Gilmore
    Report Reply
  • ccadyccady

    My Husband and I are going through the exact same thing!  We actually volunteered to find out if my husband has the gene for HD or not about a year and a half ago, and he did test positive. 

     Our decision to do IVF/PGD is to make sure we stop this disease with him.  I just completed the preliminary tests for fertility problems, and we will be starting the IVF/PGD process in June. 

    It is exciting, but also very scary at the same time.  We never tried to have a child naturally, and I hope that everything works are our end result is a healthy baby!

     Good Luck to you!

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