There's also HSD, which has a lot of overlap and may yet be a subtype of EDS, but the genetic marker hasn't been found yet. And when you get a patient with the full associated combo of symptoms [0], each of which only reveal themselves or become problematic over a long span of time (e.g. eye problems at young age, period problems / endometriosis as teenager/adult, neurodiverse conditions only diagnosed in 30's, severe joint problems and fatigue in late 30's, etc), few people will actually link them together as possibly having the same single cause.
But thanks to the internet, people with symptom X will find other people with symptom X and before you know it you have a group of people that are like "Hey, we all have symptom X, Y, Z, A, B and C, what gives?".
[0] https://en.wikipedia.org/wiki/Hypermobility_spectrum_disorde...
The real problem is twofold. One is that EDS had historically been a diagnosis of exclusion, and a lot of the diagnostic tests were difficult. The second is that the disorders overwhelmingly affect women, and women tend to get ignored about chronic pain and fatigue.
Did doctors confirm Ehlers Danlos with genome sequencing?
"You're here for a prolactinoma?" "Nope" "I'd like to get this blood work done tho"
One week later the blood work confirmed her hunch.
Experience can get some crazy results.
I could not tell you the number of doctors who have rolled eyes at the mention of ehlers danlos and hypermobility disorders.