hello EDS people. calling all EDS people. especially if you live in Victoria, Australia like me.
what is the process of evaluation like? what kinds of tests do they do?
I have been informed that I should discuss this with my GP and get a referral to a rheumatologist(?). I have been ignoring this possibility for years but given that I had an actual nurse informally assess me and on the basis of that tell me that I should get it formally assessed, I'm actually thinking of getting the process started with the assumption that it will take a long time.
also, not to be flippant, but what's the point? what will I gain by getting my fun joints assessed? why should I care?
and yes, while I was told to ask specifically about EDS, I do not have enough information currently to know either whether I would genuinely meet criteria for any kind of hypermobility, or whether Ehlers-Danlos is even the kind of hypermobility that would be relevant.
@thebibliosphere i think from memory you have EDS? sorry for the ping but I just want to be faintly prepared before I go to my GP next week.
funny fact: it was actually a crisis assessment team psych nurse who was doing a holistic initial assessment and when I mentioned both ASD and potential POTS immediately asked whether I was bendy or not, then asked me to demonstrate specific joints. she seemed more interested in my bendiness than the "psychotic symptoms"... which were the actual reason I'd been referred to the CATT in the first place after coming out of the psych ward a few days earlier. I find this amusing. anyway.
I can’t tell you what the process of evaluation will be like for the area you’re asking about, but to address your “what’s the point?” point:
Ehlers Danlos Syndrome—and many other connective tissue disorders— affect Every facet of your health. From dental care to vascular health, to which antibiotics are safe for your tendon health, to straight up needing different types of sutures, anesthesia, and recovery care after surgery.
And that doesn’t even begin to cover comorbidities like POTS, MCAS, fibro, etc and general quality of life.
It’s also important to determine which type of EDS you might have because it can help with preventative care for your future based on the specific subtype. There are some very specific health complications that can occur and knowing if you have EDS can help you take preventative steps, but also hopefully ensure you get the care you need more quickly in the event something does go wrong.
I have hEDS and while my joints are garbage, it’s my immune system that’s more heavily impacted, as well as my internal organs which have tried more than once to become external of their own volition. I also had my Achilles tendon rupture spontaneously after being given an antibiotic (ciprofloxacin), which can affect connective tissue, even in people without Ehlers Danlos Syndrome.
To put it bluntly: it’s not just your joints, it’s all of you. And all of you deserves care ❤️
