I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2). The classification was made more strict in 2017 where only 15% of those previously diagnosed with hEDS maintained that definition with the new criteria (3). So is it 1/3100 to 1/5000 with the new 2017 criteria? Well revert that one change and you get 1/456 to 1/750 which is pretty close to 1/500. And let's not forget it did start at 1/50K so the 1/5K is one order of magnitude and 1/500 is another. So I think the history of being off by at least an order of magnitude in the past is important here.

Names of papers:

1. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison.

2. The lack of clinical distinction between the hypermobility type of Ehlers‐Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome).

3. Utilization of the 2017 diagnostic criteria for hEDS by the Toronto GoodHope Ehlers–Danlos syndrome clinic: A retrospective review

I know doctors would rather make out that this is a social phenomena and not gross medical incompetence but the reality is way more people have hEDS than have been diagnosed with it, someone is far more likely to find out they have hEDS from TikTok than they are from a doctor. Doctors are not doing their job.

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Aurornis 2 hours ago | parent [-]

> I added the HSD to the hEDS and gave my reasons for doing so. The figure for hEDS+HSD (1). I'm not the only person to do this (2).

Sorry, but you’re just sharing bad information.

The prevalence of hEDS is not 1:500 by any reasonable source.

I know I won’t convince you because your posts have many layers of information sourced from the alternative medicine world of TikTok and TikTok-adjacent sickfluencers, but I hope I can at least convince other people reading this to pursue higher quality sources and be skeptical of HN commenters who make claims about under-diagnosis based on conspiracy theories.

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cjbgkagh 2 hours ago | parent [-]

The prevalence of hEDS + HSD is widely accepted to be 1/500 in medical research, that's not controversial. The only thing slightly controversial about my position is that I think they are fundamentally they are the same thing, a distinction without a difference. The 2017 criteria used to distinguish is rather arbitrary and is itself rather controversial. You have to use this criteria if you want to get the 1/3100 to 1/5000 numbers. And remember it was 1/15K back in the 2000s, that's a half an order of magnitude right there. I did make a mistake, I forgot that it originally started at 1/150K back in the 60s, where I had it starting at 1/50K. With numbers like that you can see a clear trend.

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Aurornis 2 hours ago | parent [-]

I responded to your post above which said this:

> * The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane.

The prevalence of hEDS is not 1/500. I am not using outdated criteria, I am using the currently accepted numbers.

I'm really not interested in this conversation where you introduce conspiracy theories or try to act like you were talking about different conditions.

	▲	cjbgkagh 2 hours ago \| parent [-]
		You seem to be stuck on this point. We agree that going by the 2017 diagnostic criteria for hEDS people are only diagnosed at a rate of 1/3100 to 1/5000. But I ask; * What’s the prevalence of HSD? * Is there a meaningful difference between hEDS and HSD, i.e. how does one tell them apart except by severity? * And would a history of 1/150K (1960s) to 1/50K (1980s) to 1/15K (1990s) to 1/5K (2000s) not suggest a prior history of under diagnosis? How can you be so sure that this time they have it right?