ARVD Program

I have been diagnosed with ARVD after a SCA since 2002. I have seen Dr. Hugh Calkins at the Johns Hopkins University on two different occasions, in which I still keep in touch with. I recommend anyone with ARVD, contact Amy Daly there in the research center to get a gentic test done. It is an "out of pocket" test, but well worth it. I did test positive for the Genetic marker for ARVD, as did my father whom never had symptons, and my 7 year old son. But because I now know he has the marker, I will be able to keep an eye on him and able to limit his activities when I feel the time is right, so I may help prevent SCA in my son. My daughter has yet to be tested, as I feel they need to have some sort of a childhood before having to worry about this. I also signed up for the AICD shock study, and the ARVD registry, as did my father since he wasnt showing any signs and I also entered my son. I feel the more they know, the better to protect my children. This tells me that this disease will continue to grow, and people like Amy Daly, Christel Tichnell, and Dr. Hugh Calkins will work for us. If you havent had the pleasure of speaking with either of them, I highly reccommend it. They will answer most your questions, or they will find out what they can and gladly get back with you ASAP, or so has been proven by Amy and Christel. I cant say enough for the team.