...or not - seriously, if you're a doctor, don't tell your patient they know more about their condition than you do because you learnt about it in medical school and have since forgotten!
Unless of course I happen also to be a doctor, which I'm not, I know where the neck of the femur is and the acetabular labrum, I also know where the trochantric bursa is (but I probably can't spell it). I know I have a rare condition, but I work best with a doctor who knows that, admits that and tries to at least refresh their memory.
When Grace was born, I had a phone consult with the anaethetist beforehand, he apologised for being slow in returning my call because he had taken the time to do his research and talk to other anaethetists who had worked with someone with EDS.
Rare, but not life threatening makes for a condition that very little is known about, particularly when the disabilities it causes are that something is painful to do rather than impossible. It could be life threatening in certain circumstances, mostly if unrelated bad stuff happens, my risk on the operating table, or in recovery are greater than other people my age, my risk of falls is higher and thus complications from them.
One particular problem that I have is poor control of blood pressure and all that the medical community seems to know is there is a statistical link between EDS and orthostatic hypotension - something most people seem to get sometimes, feeling dizzy if you stand up to quickly, but I'm becoming suspicious that there may be more that hasn't been noticed, particularly as I suspect that ultimately what is currently hypermobility type EDS may well be split into subgroups, for example, I have worse skin than many in this group, but joint instability in the most commonly tested joints and directions of movements is not as bad, but some movements, particularly rotations seem worse - and it's these ones that seem to lead to bone and cartilidge deterioration.
I'm available for medical research should anyone want me! My obstetric history in particular seems to be almost unique, that I also have narcolepsy makes me particularly unique, working with 1 in 2000 for narcolepsy and 1 in 5000 for EDS, that makes me 1 in 10 million, making the expected overlap for two independent conditions be about 30 people in the USA, 6 in the UK, i.e. still a very small number even if underdiagnosis of both conditions make them more common than the current numbers suggest.