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Moyamoya Syndrome - we should all be educated.

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  • Cheryl in NM
    I have been meaning to bring this topic up - even though I rarely check this site these days. Our son had a stroke this past January, and was diagnosed with
    Message 1 of 2 , May 31 9:25 PM
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      I have been meaning to bring this topic up - even though I rarely
      check this site these days.

      Our son had a stroke this past January, and was diagnosed with
      Moyamoya. Like most people, I had never heard of moyamoya syndrome -
      so needed to do a lot of self-educating!

      I am attaching a link to The Boston Children's Neurosurgery FAQs
      about Moyamoya. Please go and read this!

      Moyamoya is a rare condition of the vasculature in the brain. It is
      seen in 1 in 2 million people of non-Asian decent, but is seen in
      about 1 in 200,000 people of Asian decent. This means that at least
      some of our Chinese children will end up with this (primarily)
      congenital condition. Our son was adopted from China last July, and
      we are so thankful that he did not have this stroke until he was
      home with us where he would get the complicated medical care he
      needed.

      In March our son had cranial revasculaization surgery - and
      THANKFULLY he is doing fine now! Dr. Michael Scott at Boston
      Children's Hospital did the surgery. There are many things to
      consider when considering the surgery and who will do it!

      I am willing to answer any questions I can for families that have
      questions or are dealing with this situation. Please just email me
      privately.

      Also, please go read the FAQs about moyamoya on this link:
      http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml

      Sincerely,
      Cheryl in NM

      P.S. Tom B - if you still lurk and see this post - would you please
      write to me! Thanks, and hello to GuGu from all of us!
    • Cheryl in NM
      OOPs! Sorry about that gang! I clicked on the wrong group and posted this here! I meant to post it to my China Adoption group! Ah well, at least you all now
      Message 2 of 2 , May 31 9:28 PM
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        OOPs!
        Sorry about that gang!
        I clicked on the wrong group and posted this here! I meant to post it
        to my China Adoption group!

        Ah well, at least you all now have the link to Dr. Scott's FAQs!!

        Yours,
        Cheryl in NM

        --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Cheryl in NM"
        <luvfunparenting@...> wrote:
        >
        > I have been meaning to bring this topic up - even though I rarely
        > check this site these days.
        >
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