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desmin storage myopathy

Michelle Mikesh

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I saw your note from several months ago on HealthLink USA. My husband's family has cardiac desmin storage myopathy running through it, and he's the only survivor out of 7 people and 2 generations. Everyone presented symptoms by the age 13, and was generally dead by the mid-twenties. One received a heart transplant in the early 80's, and survived very well for quite a while. My husband's brother died only a few years ago. (My husband's 23, we just got married) My husband, Robert, and I calculated one night the probablilty of the disease being recessive (we're both scientists) and there have never been that many people on the earth. We still plan to seek some genetic counseling, but we feel confident that the disease is dominant, and that he won't have to worry about getting sick, or us having a child stricken by this disease.

 


   
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