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Holt-Oram at 41

Linda

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I was born with holt-oram syndrome. I had an ASD repair when I was 12, I am now 41. My defect is apparent on both sides, with the right side being the worst. Does anyone have any information on what I have to look forward to as I get older. I seem to be losing more strength in my hands everyday (not that it was ever very good). I also am now experiencing a lot of pain in the bones of my right hand and wrist which is more affected with the deformity than the left one. Doctors say there is nothing they can do. Is there anyone experiencing any thing similar.

 


   
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