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[huntington's at risk] ReEXCLUSION TESTING

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  • handsomematt2001
    ... Oh gee - I knew someone would ask that, well I ll answer in the terms I can just about remember, my wife is the best person - she s a genetic Paediatric
    Message 1 of 2 , Dec 1, 2004
      --- In huntingtonsatrisk@yahoogroups.com, bbwlady222@a... wrote:

      Oh gee - I knew someone would ask that, well I'll answer in the terms
      I can just about remember, my wife is the best person - she's a
      genetic Paediatric nurse - she's explained it loads of time to me and
      I still can't quite get my head around it - but here goes:
      Ok, when we were looking to have our first child in 1999, we didn't
      want to run the risk of just *going ahead* with a pregnancy in case I
      passed the gene on (If I had it - the risk I mean)so in Leeds UK, the
      centre for genetics in the region offered us an "Exclusion test".
      So, my wife got pregnant the natural way but at 11 weeks, they tested
      the baby and looked for:
      We all have 2 sets of Chromes - 23 from dad, 23 from Mum.
      Huntingtons lies on Chrome No:4 so they looked specifically at this
      in the baby at 11 weeks.
      Our first child's chrome was more like my mothers No:4 not my dad's
      (my mum NOT being the one who had HD)so the chances of the child
      inheriting this from ME is something like 99/1 (If of course i had it
      in the first place)
      If the chrome was more like MY DAD's - then it has a chance of
      inheriting the fault (again, if I was at risk which they don't know)
      the beauty of this test (if beauty is the word) is that they don't
      look at ME and determine if I am at risk...
      It's all very confusing and I'm struggling to give the correct
      scenario again... I'll get more info and let you know.
      Of course now with me not at risk - our kids are fine.
      This way of testing is not nice because again it's 50/50 - but it
      does mean that if the result is good - the babies are free, if it's
      bad - then the choice of terminations (which we would have done) is
      What IS good for atrisk people is that - there is so much in the way
      of technology these days, 30 years ago when my dad had HD - there was
      nothing or hardly any positive choices to choose from, so at least we
      all have choices now ,......but again, sadly - it's all still 50/50
      so it's very much a case of pure luck.
      It's taken over 100 years to wipe HD from my family which is
      remarkable and who knows what the next 100 years can achieve...
      My mother told me yesterday that my father's (who died of HD)
      grandmother had 7 children (including his mother) and ALL 7 inherited
      HD - jesus that IS bad luck which leads me to believe that i truly
      have had a charmed life....
      Having a negative for me is like starting a generation all over
      again...can't quite get my head around that one!

      > what is excluded tested?
      > In a message dated 11/30/2004 7:30:17 AM US Eastern Standard Time,
      > matthew@s... writes:
      > excluded
      > tested
      > debbie
      > Http://www.slayingthehddragon.com
      > love wasn't put in your heart to stay, love isn't love till you
      give it
      > away.....You don't love a woman cause she is beautiful, but she is
      > because you Love her......... life is not measured by the amount
      of breaths you
      > take, but the amount of moments that take your breath away.
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