Cortney Gensemer, PhD
Region: US
Friday 31 July 2026 23:06:34 GMT
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lindsayvp :
🙋♀️I have thoracic outlet syndrome and nerve sensitisation.
2026-08-19 01:33:49
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Zebrawarrior :
This is the vast majority of hEDS people, don’t know why it needs a subtype
2026-08-18 17:05:25
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Sage :
I have chronic inflammatory response syndrome from mold infiltrating the bone and cartilage of my sinuses, and I can't find help
2026-08-17 17:41:49
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Hekate's Horde :
Diagnosed with HSD at 48 - any family that was extra flexy is 💀 and was never officially Dx. My brain MRI looks like MS but my CSF is clean. Migraines. Small Fiber Neuropathy. Stroke runs in our family. Joint pain. never entrapments. Nerve pain. Fibromyalgia. suspected venous compressions. Every year it gets tougher. 💜✌
2026-08-17 18:29:53
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L🌷 :
I have a HEDS diagnosis but also have 6 of the other diagnosis named, I believe I have 2 others but no doctors will help with them so those 2 aren’t confirmed. I definitely think I would have neuro EDS
2026-08-17 20:57:15
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McKayla Nichole :
I really would like to get a Eds dx instead of just suspected… who can I go to for that?
2026-07-31 23:44:31
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cutebreakfast :
There seems to be a relatively high incidence of hypermobility within the IIH population.. probably because vascular stenosis is a disease of the connective tissue. If it’s true what they’re saying at the EDS conference this year about EDS have major hormonal implications, it also makes sense because IIH is also heavily linked with PCOS/PMOS
2026-08-01 06:30:52
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skttlsno1 :
I'm also curious about adding encephalopathy to that list. And the possibility that the cause is faulty connective tissue in the meninges. At least two of my cousins and my daighter (all who have eds) have had chicken pots or lyme go into their neurosystem. A friend of mine's son also likely has EDS and had 2 forms of encephalopathy at the same time when he was sick as a toddler. We also suspect I have a CSF leak - waiting on the MRI.
2026-08-14 04:47:49
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Mary Alma :
My family thinks they are missing a type like this. My cousins and my sisters are get older and strokes and seizures.. and pretty much everything on that list. With adding hallucinations and FND like symptoms. We can’t get help.
2026-08-02 01:09:42
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Tyler's Dream :
This would be my family. Tyler also had Dorsal Arachnoid Webbing. One reason causing his syrinx.
2026-08-17 14:18:20
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Joshalyn :
This makes so much sense for meeeee. I’m diagnosed hEDS. I have MCAS, Dysautonomia, IIH, jugular vein compression/eagles syndrome and mire that has yet to be uncovered!
2026-08-02 23:57:14
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desertwillowlane :
oh my gosh....I have been searching for answers to my neuro symptoms,my current dx are MCAS, pots, sfn, eagles plus graves And IgA deficiency. no one had been able to connect my neuro symptoms to anything. but ruled out Ms, and other know Neuro immune disorders. what kind of provider can help with insight on this through this lens?
2026-08-17 04:30:22
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funkychic73 :
Those were all things genetics looked at when I was diagnosed. They looked at all my scans. At that time it was all considered part of EDS! I was diagnosed though in 2014 when the criteria was even more strict. I think that was a good thing. I have a 7 page letter even connecting a majority of these to what they use to call EDS type 3
2026-08-17 14:40:07
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Laura 🦓♾️🐙🏳️🌈🍉 :
TOS also
2026-07-31 23:52:11
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Michelle.777 :
I have hEDS POTS IST and small fiber neuropathy. Also have major depressive disorder and various other things.
2026-08-01 23:15:29
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Nathalie van Dijk :
well, i am 51 now. not gonna be a solution in my lifetime....
2026-08-06 20:07:14
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🧡🦦 otterly Marsha Faye 🦦🧡 :
I would love to be a part of the studies! I almost died last year from not being able to eat. My specialists seem to just be lost. I’m scared. I don’t want to be but I am desperately scared and yet I still have to fight my ins 🥺
2026-08-01 04:20:06
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Sage :
I have abnormal HLA haplotypes mold, biotoxin illness and definitely Neuro EDS
2026-08-17 17:41:10
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Julia :
That would sure make sense for my daughter. But I think hEDS inherently has neuroimmune involvement. I also think that category seems to include multiple phenotypes though.
2026-08-02 09:36:19
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MamaMarcy :
If you need subjects, pick me. I literally have all that. Way more neuro stuff than the norm. HELP!! I
2026-08-02 19:15:54
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Sadie Aydee HD🧭 :
I have genetic studies and a shitload of my own research. my kids and I carry variants that have not been found in the population and we're dying.
2026-08-01 04:47:30
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cuh_tour_me_🌹 :
How about non epileptic seizures?
2026-08-03 03:43:56
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Princess :
Ive had a major pons stroke and a bunch of little ones in there. I shouldn't be able to walk but here I am
2026-08-06 19:36:51
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Sage :
i have suspected hEDS (several dr’s have noted it, but cannot officially diagnose me) and i needed a cranial vein stent placed for intracranial hypertension last spring
2026-08-01 22:47:52
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MJLloyd75 :
And what about all of us who are also Neurodivergent? Autistic? ADHD?
2026-08-09 05:56:38
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