As of this Thanksgiving, my dad's brother, my uncle, received the news that he also has ARVD. However, it is possible to carry the gene but not be affected by the disease, which in his case is the situation. That's good news for him, meaning he won't need a defibrillator, just annual check-ups with a cardiologist. The bad news is that his daughter, my cousin, is likely a carrier of the disease and is probably affected by it. She has already had one major unexplained syncope episode (passing out), and all the signs of that day point to her having ARVD. My uncle will not be telling her until after the holidays as she just moved into a new house in West Chester, New York with her two baby boys. I believe one is about 4 and the other one just over a year old. This means, if she does in fact have the disease, then it is very possible that at least one of her sons if not both also carry the disease, which is a very hard situation to handle. She probably won't be tested for another couple of months, and the test results take 8 weeks, so we won't know for sure if she carries the disease or not until probably April or May of next year. If her test comes back positive then her kids will also need to be tested and if they are confirmed to carry the disease it will be very sad news. It is much harder to make decisions and to know whether the disease is actually affecting a child or not at such a young age. They will have to get numerous tests done, and be watched over very carefully, but we will hope for the best. Children with ARVD that are affected with this disease have had defibrillators put in them at very young ages and I would hate that for my little cousins. And I would hate for any sports or physical activities to be limited for them as well. I have opened up a whole Pandora like box within my family and it certainly doesn't feel good, it raises many more questions and fears, but as of now we can only hold out hope as a family that if anything, if they carry the disease they will not be affected by it. I would absolutely hate to see any other family member have to go through what I've been through. Although each case is different, and mine was exasperated by my kidney disease, ARVD is a hell of a heart disease to manage, with absolutely no cure. The ARVD journey is certainly not over for this family or for myself. So as of now that's three of us with ARVD, myself, my father, and my uncle. Next on the list is to get through the holidays, break the news to my cousin, get her tested, and wait for the results, and then I will be back with another update.
Thanks for all the continued love and support!
Happy Holidays!
