Arrhythmogenic Right Ventricular Dysplasia

I'm a teenager from Massachusetts, and my family has a history of Arrhythmogenic Right Ventricular Dysplasia. My grandfather had it, and my father was the only child out of four to develop the disease. I have cardiology appointments every few years to check my heart. The information I find online is mostly devoted to research and for those who have ARVD, not necessarily those who may be at risk.  I really want to get into running and getting back into shape, but I'm concerned as to whether I should. My physician didn't note any problems during my physical several weeks ago, but I'm just worried about the disease. Can I exercise despite my family history, and should I even be worried about this? I know you can't give medical advice online, so I'll just take an indirect opinion on this. Any advice would be deeply appreciated. Thanks for any help!

This is an important question and there two ways to approach it. One is to keep testing your heart, the other genetic testing, both of which, I assume, have not yet excluded ARVD. As you probably have learned already, to confirm or exclude a diagnosis in your case may be complicated.


Findings in ARVD include fatty tissue replacement of some of your heart muscle with fatty tissue, especially on the right side of your heart, causing ventricular arrhythmias that are usually exercise-related, and sometimes lethal:

Testing therefore focuses on finding evidence of all these, and besides genetic testing include things like a cardiac MRI and exercise stress testing, the first to see whether there is evidence of abnormal fat in your heart muscle, the second to test you for arrhythmias while exercising:
If your stress test is negative, long term Holter monitoring for a week or longer might be helpful.

Unfortunately, there is no single test, which is why I recommend you to find a center with expertise in this area. In Boston some of the best facilities in the world are available, and I recommend you take advantage of that. Mentioning your family, you didn't tell me whether there have been lethal complications?

Hope this helps,
Dr T



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