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Is there anyone else on this site/family members who have this genetic condition?


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  • Yes I have it and it was not discovered till two of my kids were found to have it.. WE have NF1 for short.. For me it explains a lot.. For my kids they have been able to get a lot of early intervention speach, OT, etc .. But its still to be seen how it affects them health wise through their lives as it affects people differently…


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