alt Hacker News> hEDS is very very very under-diagnosed
Ehlers-Danlos syndrome is severely over-diagnosed right now by providers who are unqualified to diagnose it, a few charlatans who sell incorrect diagnoses as a specialty to serve a demand, and scores of TikTokers who think they understand better than the specialists.
> and this one simple fact is sufficient to explain a the prevalence of a whole zoo of seemingly unrelated conditions.
This is precisely why it's being over-diagnosed: The internet culture definition of Ehlers-Danlos has become the latest catch-all to explain a host of unrelated symptoms. Patients who are frustrated with a lack of answers stumble upon Facebook groups, Reddit posts, TikTok videos, YouTube talking heads, or other social media outlets where non-medical people explain that Ehlers-Danlos can explain almost any vague symptom you have.
This has become a big problem for Ehlers-Danlos specialists because it's getting hard to identify the correct referrals from all of the self-diagnosed patients demanding referrals from their doctors.
> There is an incentive to keep hEDS as a 'rare' disease as the US has extra grants for disease in this classification and this has put pressure on diagnostic criteria which was made more strict so fewer people would be diagnosed with it.
Sorry, there is no conspiracy to withhold diagnoses from people. Doctors aren't getting together and conspiring to stop patients from getting the right diagnosis so they can collect more grants.
This conspiracy doesn't even make sense. Doctors and researchers do not financially benefit from keeping diagnoses down. If they wanted more funding, they would be working hard to get more people diagnosed. More people getting diagnosed means more money flowing in from insurance companies and it becomes a higher priority for grants. Not the other way around!
> * The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane.
Even the Ehlers-Danlos society, which leans toward the more generous diagnostic criteria, does not claim that hEDS is 1 in 500 [https://www.ehlers-danlos.com/what-is-eds/]
There are some populations where you can find higher incidence, but 1 in 500 is not true at all.
Replies
> Sorry, there is no conspiracy to withhold diagnoses from people.
Nope, most of you are just ineffective, which is almost worse.
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.