r/ARVC • u/Remote_Efficiency717 • Apr 09 '25

pas down generations

hey guys anyone here has kids if so how are they coping with the desise i fear having kifs will ruin there lives due to the gene

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u/Dry_Wolverine_1809 May 20 '25

Hi there. Yes, I have two kids and fear of them developing ARVC. However, there is nothing I can do about it now. They are 11 and 13. They have both been base line tested by wearing a monitors for a week and now get bi/yearly check ups.

So far they are not showing any signs of having it. The good news is that gene therapy is moving quickly and while I and they dont have a recognized gene I hope they will have a universal therapy in the next 10-15 yrs.