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doug
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pomona, USA, CA, California
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hi
Nov 15th, 2003 at 8:48am
 
Hi Kalise,

All is well here. I am sorry to hear about your son. I can only imagine what he's going through and had to deal with after going through it myself. I was diagnosed when I was 29 so it was much easier for me to be "strong". It breaks my heart to see a child in any sort of pain, much less suffering from a disease. Do you mind if I ask a personal question? Did you or your husband have moya moya or was there a family history of it?

I am 30 years old. I hope to begin a family soon. But I have to really seriously reconsider if my chances of passing on moya moya to my child far exceeds that of the "normal" population. The reason why I ask is that I am the first and so far only case in my family that's diagnosed with this disease. Just curious.

Well, hope you like it here.

Doug
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STrantas
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Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
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Re: hi
Reply #1 - Nov 15th, 2003 at 5:22pm
 
Doug - from what I've read, moyamoya is only hereditary in the Asian population.  However, if you read the Q&A transcript from Dr. Scott (DJ has a link on the links page) it says he has treated one woman whose child also has moyamoya - but I think that is more the rare exception than the norm. - Shari
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Dr. Scott did my surgeries - 12/29/03 and 1/5/04
STrantas http://www.facebook.com/home.php?#!/strantas?ref=p STrantas  
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kalise
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my son lives with moyamoya.

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westernaustralia, Australia, australia, 21, 203, WA, Western_Australia
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Re: hi
Reply #2 - Nov 15th, 2003 at 8:25pm
 
Hi Doug, thanks for the message.  No, my husband nor myself have moyamoya, mitchell is the only one in the family to ever have any kind of neuro problems. I agree with Strantas, from research i've done there are very few cases of more than one person with moyamoya in the family, and where there is,  more often than not it's siblings.  I'm not sure how accurate this is, but our neurologist says the chance of a sibling having the disease too, is about one in one hundred thousand.  I have only heard one case where a mum and daughter both had it.  I understand your concerns about having kids, even when my Daughter gets sick with a headache, it's always in the back of my mind, oh no they're going to tell me she's got it too. It's like living in fear i guess.  But doug, PLEASE DON'T let moyamoya stop you from havin kids, they are truely a prcious gift, and you sound like you would make a FANTASTIC Dad. Take Care and stay in touch......Kalise
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