Question?: Rett Syndrome

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Donald asks…

Does anyone know where I can find information on males with Rett Syndrome?

I need information on how it affects their physical health. And most importantly there bones. I only need this information on males, and not females. Since males don’t usually survive birth if they have retts then it is making it hard to find information on it. Please help?

admin answers:

Hello…my daughter has Rett Syndrome so I know a little bit. Males usually do survive birth but don’t typically live for more than a year. Males who have an extra X chromosome (XXY instead of XY) are like girls with RS and have a comparable lifespan and symptoms. I think you are going to have a hard time finding info on bone denisity. I don’t think it is publicly available even on the female population. Research is still ongoing and the majority of it just started in ’99, so I doubt you will find any info. My daughter is part of the RS natural history research and they have not published the info yet, but bone density is one of the things it will cover. But you can try searching these sites: www.rettsyndrome.org and www.rsrf.org

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