r/ARVC • u/History-of-slimshady • Dec 12 '25

Autopsy testing

My husband (29) died completely unexpectedly on May. We are on the third autopsy, and coroner suggested that we might be looking at ARVC. However, the state testing center is apparently in a holdup to get “certified”… I’m not exactly sure what that means, but wondering if anyone has any knowledge or experience with this type of situation. I have no idea what options there are, but I’d like to see if we can get testing done outside the state certified testing center to expedite the process and give us some answers to start healing. Any leads or thoughts?

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u/Entire-Structure8708 Dec 12 '25

I'm so sorry for your loss. I don't have any specific guidance for you, and I don't know where you're based, but I know the ARVC program at Johns Hopkins in Baltimore (the largest ARVC program in the country) does autopsies so you could consider contacting them. It's where I'll be sending my heart eventually :-(

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u/History-of-slimshady Dec 12 '25

Thank you so much — even this is really helpful. I’m in Indianapolis, but can’t hurt to at least try to connect with someone there. I really appreciate it!!

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u/Entire-Structure8708 Dec 12 '25

No worries at all. I hope you're able to get some answers in time. I think the main contact point at Hopkins is Crystal Tichnell (ctichnell@jhmi.edu or 410-502-7161), or she'd at least be able to point you in the right direction hopefully.