Not interested in links to sites, found plenty. I'm interested in personal experiences; either yourself, a relative, friend, etc. Type, age of onset, symptoms, treatment approaches, etc. Thanks.
a heart muscle disease. good to see that it's just for research
my grandfather was having a lot of heart problems and thought it might have been this. it was apparently just irregular beats (put in a pace maker). he has a lot of pooling of fluid around the heart when he works for a long time (gardening, etc) and gets to where he cant breathe. he just has to take it easy. they dont think it's cardiomyopathy though, just old age (being 80 and 6'2 260lbs doesnt help).
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