Understanding Hypermobility Spectrum Disorders & Ehlers Danlos Syndrome

We’re a clinic focused on making invisible illnesses visible - join us on this journey!

We help people overcome complex health conditions including:
🔹 Fatigue Syndromes such as ME/CFS
🔹 Dysautonomia such as OI & POTS
🔹 Pain Sensitisation such as Fibromyalgia & Chronic Widespread Pain
🔹 EDS & HSD Syndromes
🔹 MCAS
🔹 Sleep Disorders
🔹 Related anxiety & depression.

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[Sophie-dktd]

Great video! Just this week I've had an HSD diagnosis confirmed. I scored 9/9 on the HSD criteria and meet 2 of the EDS crtieria. As you say, it's the treatment that matters, not the name 😊

[PaigeofaBook]

The difference between hEDS and HSD is a fairly arbitrary diagnostic criteria that was developed for research purposes (to find hEDS gene/s) and not really for diagnostic accuracy or to better serve people living with hEDS. There are many people living with common hEDS co-morbididties, multi-system involvement and frequent subluxations and disolcations who don't meet the 2017 criteria and therefore have an HSD diagnoses. Completely valid community concerns about this problem, and the confusion created by the idea that hEDS is a "more severe" version of HSD which this video unfortunately kind of perpetuates, is why the criteria is currently being reviewed. The difference between hEDS and HSD in a lot of cases is whether you were diagnosed before of after 2017.

[LouieTheGoldenAgeGamer]

Thank you for clarifying. This is a great explanation.

[annajva]

Yes thank you! I've been bumped around for years by docs with no idea what hypermobility is or what to do with it. Now I can throw this video at them

[astralb.]

I have HSD; but have all of the comorbidities of Heds (ibs, gastroparesis, pots, temperature intolerance, MCAS etc.). However the problem is that EDS-patients get insurance coverage fortheir treatments while HSD-patients don't; no matter how severe it is.

[Truerealism]

Whats rhe difference.in chronic widespread pain and fybromyalgia

[aprilmidnight]

Could the criteria be exluding those with de novo mutations? What is the process regarding someone who has these symptoms but has no family history?