mattsmom
Junior Poster
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My son, Matthew, has moyamoya.
Posts: 59
Albuquerque, USA, usa, 180, 215, NM, New_Mexico
Gender:
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I also wanted to post this from a q & a session with Dr. Scott:
Does moyamoya disease run in families? Do my affected child's brothers and sisters need to be checked for the presence of the disease? In our own series, we have 19 patients (twelve families) where there are either siblings with the disease, or a parent-child syndrome. One operated patient has two children, one of whom has the moyamoya disease. One patient has two other siblings who have the disease. In general, however, a familial or genetically transmitted form of moyamoya disease is rare in the Western Hemisphere. There is no current method of determining before birth whether the developing fetus is likely to have the disease. As of March 2008, we have not recommended that siblings of affected patients be studied by MRI/A or angiography unless there are compelling reasons to do so, such as symptoms that suggest temporary loss of blood flow to the brain, such as stroke, TIAs, seizures, and so on. We have recommended that identical twins be studied, as well as siblings where there is a strong family history of stroke at an early age. Although the average age for the development of symptoms is around 7 years, no one know when the artery narrowing first begins, and it is certainly conceivable that an MRI/A during the first year of life might not detect the potential presence of the disease.
I hope that will be able to make you feel more confident about you, your sister, and your child. Dr. Scott had seen more than 100 patients when I met him 10 years ago. If he doesn't worry too much about it being hereditary, I would feel more confident. I am not saying to ignore symptoms. You do need to be MORE aware. But I hope it eases your worries.
Kim
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