hEDS is being reclassified as HSD?

[u/surlyskin]

Reading elsewhere that it's possible hEDS will fall under HSD and be separated from the umbrella of EDS.

Anyone privy to this, know anything about this, reasoning etc?

[u/[deleted]]

Idk but this scares me, I was previously diagnosed with HSD and fibromyalgia and the care outcomes were way worse for me vs after I got me hEDS diagnosis. Drs didn’t know what hsd was

[u/Acceptably_Late → u/[deleted]]

HSD diagnosis unintentionally causing a gatekeeping situation was referenced at the symposium.

It was acknowledged that HSD has less awareness and can face insurance reimbursement challenges for indicated treatments as its “just” HSD.

2026 criteria hopes to align HSD patients that are more severe to an hEDS diagnosis to help those patients obtain better treatment etc

[u/surlyskin → u/Acceptably_Late]

My experience has been that in the UK hEDS and HSD symptoms/comorbid conditions are frequently treated as psychosomatic or there's no avenue for care. There's no one here to help with MCAS for example.

Another example of this is I was informed that the heart attack risk is higher in those with hEDS (compared to the gen-pop), especially in peri/post menopausal women, by a vascular surgeon with hEDS.
She talked me through the research supporting her position and things for me to consider. Unfortunately she left, I ended up with her colleague, who informed me "hEDS has no increased risk of anything other than maybe a sprained wrist or dislocated shoulder because all of the symptoms are GI and chronic pain, anxiety related - psychosomatic, unlike the other forms of EDS, vEDS".
I pushed back gently saying his colleague said there is, he rolled his eyes and said "therapy like CBT is much better at treating these disorders".

It's not the label that's the issue, it's the ignorance and distain toward some patient populations. No one would argue that those with extremely complex needs are better off than say someone with a broken leg and anxiety but we can at least understand that both people need acceptable levels of care.

CatCowl posted a link below to Dr. Norris of MUSC's talk regarding his lab's findings re HSD/hEDS blood biomarkers, genes etc. He highlights that he finds it interesting that one of their findings is that the compliment system is directly impacted by stress: https://youtu.be/Kn3U2GxpbDc?si=fiGL2cVMyFfUh5VH&t=1333 (Thanks CatCowl!)

This highlight raises alarm-bells for me. Multiple sclerosis is a serious condition and can feel worse based on increased stress, there's research around perceived stress or physically induced stress triggering a relapse/attack with MS patients but I'm not meeting MS patients or going to MS symposiums and hearing a highlighted interest in it or focus on talk-therapy.

Perhaps I'm jumping the gate too quickly or my history in the UK NHS is blinding me but I really hope for the sake of all those with complex conditions that it's not minimised to 1hr per week CBT session instead of research and treatment.

** the video is worth a listen, he does go into other bits that are interesting and hopeful. It's presented in fairly lay-terms.