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by smeej 873 days ago
Are there other hallmarks of the condition that might help rule it in or out?

They told us part of the heart muscle itself was dead, meaning there would have been no hope of resuscitation, but also that it showed signs of multiple infarcts. They just didn't know if they were all at once or had happened over years and had never been diagnosed.

Medical neglect is a not-insignificant part of our childhood stories, and it's hard to figure out what we don't even know to pay attention to as adults.

1 comments

I wish I had more to offer, here.

I don't think there are, but I'm not a doctor.

It's usually tested for genetically or with an ekg. It doesn't have any outward physical signs or traits that I'm aware of. There are several different subtypes and each has different triggers; so diagnosis usually happens in response to an event. For example, passing out when the phone rings because you're surprised. I don't think a lot of doctors know much about it. In my case, I didn't find out I had it until I was in my 40s and that was because I made contact with my biological family (I'm adopted) and they told me I needed to get checked for it.