> 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 I am not using outdated criteria, I am using the currently accepted numbers.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?