hmmm the 'degenerative' comment- grrrhhhhh- as afaik speaking in med terms, in and of itself, it is NOT a 'degenerative condition' (like RA or lupus or some types of MS are)- as in it isnt absolutely 'unavoidable'/doesnt happen 'all by itself'/'all the time' that you 'degenrate', for example go from subluxing 1 joint to dislocating that and more joints-
afaiu it's more that 'more than normal wear and tear' and frequent injuries (which are aggravated by bad posture, wrong muscle use, always locking joints in hyperextension, overdoing etc etc) and the lack of understanding of the condition amongst general med bods (and lack of funds for loads more research) = the lack of early diagnosis and intervention/right treatment that causes so many of us to 'degenerate'-
or at least that seems to be the current theory- if the current push to treat bendy kids early on and intensively will really mean that they'll have less probs a s adults - we'll have to see...
but there is a good chance that this can work, as with the right help and loads of effort things can improve even in adults (look at hannah- after over a year of the 'right' daily physio exercises her 'more out than in' shoulders now even stay in when she's pushing herself in the wheelchair!!!)
and there is the same theory around re chronic pain- that if you catch/treat it early it might not become permanent- but whether that applies to chronic pain syndromes???? and where/ what/ if there is a difference between chronic pain and chronic pain syndromes...???????
re "izzy didnt even mention the name"- I thought that was somewhat disappointing... but yep it seems 'realistic'...
but we can change that 'reality'
... if all of us when asked first just 'name it' /say "ehlers danlos/hypermobility syndrome" rather than some explanatory comment of what it does/is... then at least the name will become more generally 'known'
i've been doing this for quite a while now and find the peops that actually arent really interested (and/or are scared of admitting to not know something) just go "oh" or "ah" or... and you're done 'explaining'
I find most peops though go "what's that then?" - "a genetic connective tissue disorder- I have loads of probs with joints, ligaments, tendons, muscles etc, frequent injuries, constant pain, get v easily exhausted and plenty more other stuff going on/wrong" - that seems to be enough explanation for most-and I'm always pleased when peops go "what's it called again?" - as that means to me they might actually remember it