EmmaLyn~🥀
Region: US
Wednesday 04 March 2026 19:17:14 GMT
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sarah murphy :
I have pots and hEDS. I leave tomorrow for the Mayo Clinic in Jacksonville. It was a great experience and if you can ever get in with them I HIGHLY recommend. 🫶🏻
2026-03-08 20:44:53
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J Sims :
When is your genetic testing?
2026-03-14 03:22:43
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sirene :
just noticed this video isn’t super recent but I am diagnosed with hEDS and present with many vEDS and cvEDS characteristics. genetic testing was all normal. mom recently was diagnosed with vEDS (she also has aortic ectasia, renal artery aneurysm, had varicose veins before she was even 18, and significant family history of spontaneous organ and vessel ruptures, aneurysms, sudden deaths, etc). turns out I actually got my hEDS from my dad’s side of the family!! there 2 or 3 of his family members that have been diagnosed with hEDS. just my luck to have EDS on both sides 😅
2026-03-27 12:11:00
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Emry (xe/xem or they/them) :
I don’t have vEDS, but I seem to have a flavor inspired by it. I had an artery dissection and stroke a few years ago
2026-03-05 20:18:16
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caroline 🩷🤍🧡 :
Good luck💔 I’m awaiting test results rn, more likely Loeys Deitz or stickler syndrome than vEDS but it’s possible
2026-03-20 22:35:40
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Bratkvlt :
It can vary person to person. My grandmother had like 12+ aneurysms. I have mEDS.
2026-03-25 09:00:10
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⋆⭒˚.⋆abby⋆⭒˚.⋆ :
i'm actually in the exact same situation at the moment! i'm diagnosed with hEDS, but i just got an appointment with a genetic doctor to test for the other subtypes. hoping it's not veds but also hoping for answers for a road to recovery
2026-04-01 16:49:58
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Bratkvlt :
Check out online genetic testing.
2026-03-25 09:00:32
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Mouse🍒 :
Every woman on my mom’s side has passed away from aortic dissections. I have Heds and I have to get an echo every 6 months to measure my aortic root height.
2026-03-31 02:32:17
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