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Reply to "Genetic disorder in your family? How to handle disclosure, etc?"
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[quote=Anonymous]I have a genetic disease that is inherited maternally with variable presentation from none to mild to very bad. I'm in the middle. I told my mother and brothers when I was diagnosed. My brothers weren't interested. My mother was interested but hasn't been able to do much with the information. My children have also been tested, which I was very ambivalent about. I don't know what effect it will have on their future. They're both boys so at least they'll never have to make any decisions about reproduction. However, I have found that genetic diseases are not well understood. When I purchased term life insurance, they didn't even ask. When I told my doctor and the pediatrician, they didn't know what to do with the information. Only my nephrologist has actually used the diagnosis.[/quote]
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