If you’ve ever struggled to get an official diagnosis for hypermobile Ehlers-Danlos Syndrome (hEDS), you’re not alone. Patients often spend years—sometimes decades—searching for answers, bouncing between specialists who dismiss their symptoms as “just anxiety” or “nothing serious.” But here’s something that should make you rethink the entire diagnostic process:
The 2017 diagnostic checklist for hEDS—the official criteria recognized worldwide—is designed so that any doctor can make the diagnosis. Not just geneticists, not just rheumatologists. Any doctor. That includes primary care physicians.
The checklist outlines clear criteria that any trained medical professional can assess. A doctor doesn’t need specialized genetic testing or rare equipment. They need a checklist, their medical training, and the willingness to listen. And yet, how often have we heard, “I’m not qualified to diagnose that” or “You need to see a specialist”?
No. If they are a doctor, and they have the checklist in front of them, they are qualified. If they refuse to diagnose, it’s not because they can’t—it’s because they won’t.
Why Does This Matter?
For many patients, getting an official hEDS diagnosis unlocks access to proper medical care, accommodations, and treatment. Without it, they are left in medical limbo, often gaslit into believing their pain is exaggerated or psychological.
Doctors claim they want evidence-based medicine—well, here it is. The diagnostic criteria have been set. So why are so many physicians still refusing to apply them?
This isn’t a lack of knowledge. It’s a lack of willingness. And that needs to change.
Let that sink in.
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