Seeking advice on EDS diagnosis

I have hEDS

HEDS here

I was diagnosed with hEDS, however… the geneticist that diagnosed me and ruled out vEDS etc… had also ran some other heart related panels on me (this is all due to sudden heart related deaths in my family) and something was found but not enough is known about the mutation found. We have to check back in about a year now.

Oh, my veins roll, hard, and break IV needles <24ga, and i seem to have the vEDS issue of—when I stand my veins stretch but since my blood pressure does not increase my heart rate increases to try to pump the pooled blood from my lower extremities up to my brain which is now stretched further away, so sometimes when I stand and get dizzy it's actually from pots and other times when I stand and get dizzy it's this vEDS thing....

Citing*

Y'all... Whatre you talking about? Getting ≥7 on the Beighton? The subtype you're all siding is literally the only one that cannot be confirmed. 🤔🧐 So confused. I score 7. My elbows dont hyperextend. AraS—long lost twins! My list: severe-combined ADHD, ASD, PTSD, GERD, ARFID, dysautonomia, hPOTS (need to confirm clinically but i get the flushing and itch and my sweat in these instances is almost purulent, and when I get my HR up it takes literally 90 mins to return to baseline, and at least 30 mins to cool from anything—so, MCAS), Reynaud's, heart pains not yet dx, vein pain, extremely slow wound healing, trichiasis (which grows upward into the lid skin and crows feet skin.. including multiple rows of eyelashes all the way up my lid, and the oeach fuzz also bobs and weaves through my skin instead of remaining short and exogenous), SUPER slow wound healing with extreme keratosis at the margins which must always be debrided else it forms collagenesque worms beneath the keratin flakes inside the dermal layers.. within the margin itself, trichotillomania, dermatillomania, The ADHD and GERD are treated tho 👏 🙄😮‍💨

There is no genetic test for hEDS yet. The Norris Lab in North (?) Carolina is working on it. hEDS is technically a disease if exclusion. Once other things are ruled out - hEDS is diagnosed. I have a LOT of comorbidities. The EDS I can deal with ok (I always listened to my body and I knew how to handle to hypermobility) - it’s all the other crap: MCAS, dysautonomia, Raynauds, a cardiac condition caused by the f’g vagus nerve, slow motility, etc.

i am still waiting to get my genetic testing done, but at the very least i have all the classic signs of hEDS. my cousin has cEDS so it’s possible that i do also. what’re y’all’s symptoms?

hEDS

hEDS plus I have a mutation for an aspect of the vascular type.

I also have hEDS

Though*

Definitely hEDS but I probably meet the criteria of other types too (not the vascular type, thought)