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0 pointsAurornis1mo ago0 comments

> 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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cjbgkagh1mo ago

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.

AurornisOP1mo ago

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 I am not using outdated criteria, I am using the currently accepted numbers.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

cjbgkagh1mo ago

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?

j / k navigate · click thread line to collapse

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cjbgkagh1mo ago

AurornisOP1mo ago

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.

cjbgkagh1mo ago

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?

j / k navigate · click thread line to collapse