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You’ll forgive my skepticism if I say that this sounds like a fully generic set of symptoms for a disease spread by social contagion rather than by actually existing.
Official government webpage https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
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If you see someone on tiktok who never shows you concrete evidence of any of the symptoms above and claims to have EDS, be skeptical and say social contagion.
If I can show you that loss-of-function mutations in collagen or collagen-related genes lead to a syndrome characterized by defects in collagen (i.e. joint hypermobility, esophageal issues, frequent dislocations, weaker blood vessels and organ tearing) with a very high penetrance and that tracks in families, if I can compare mutant and wild-type forms of those proteins in in vitro functional assays and show a difference, if I can either knock those genes out or induce the same mutations in various animal models and show the same syndrome and you're still skeptical of the existence of EDS I'd say you're an [expletive redacted].
If I can't show you a genetic mutation for a subset of patients that still have many of the symptoms above, well, sure, some people may be lying. But...you understand this is true of many diseases, right? Like, do you not believe in lupus? Clinical depression? Rheumatoid arthritis? Many (possibly the majority, or all) diseases have extreme monogenic forms and milder polygenic (we assume) forms. Similar to Alzheimer's patients with mutations in PSEN, APP, etc. who get an aggressive, familial form of the disease in their 30s versus most Alzheimer's patients who show up ~60-75.
Except you haven’t shown me any of these things. I’m prepared to take your word for there being a gene mutation which causes those symptoms, in this specific instance going by the name EDS. But ‘some attention-whoring women with poor mental health claiming the disease exists because of a set of symptoms nearly all attention whoring women with poor mental health exhibit’ was the evidence presented, and it is indeed a valid criticism that that’s the same thing as transgenderism, anorexia, non-celiac gluten intolerance, etc.
How exactly do you pick up joint hypermobility via social contagion? I'm willing to believe your argument (and I'm sure there are other mysterious syndromes which are actually just social contagion) but in this case there's an actual physiological difference that seems beyond the ability of the human body to fake. Joints normally can't bend that way and I don't think reading a bunch of tumblr posts can really change that.
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I mean, this does exist. I'm non-celiac but I can't consume gluten.
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Do you want papers?
I can't and am not trying to tell you that everyone on SickTok is sick. All I'm saying is that EDS is almost certainly a real disease, and not even as ambiguous a diagnosis as some other things that are less controversial.
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