Bendiness and Neurodiversity

[davidgillon]

I had lunch with a friend who had seen my mention on FB of doing the Living with HMS/EDS thing for DiversifYA, and in the course of chatting about it mentioned the fellow bendies I'd met at Worldcon. That got us talking about the fact all of us weren't just bendy, but neurodiverse* even though there's no documented link and she made an interesting point (well I thought it was interesting anyway).
 
She'd asked me how common HMS/EDS is, I'm not sure what the figure for HMS, but I've seen 1 in 2500 to one in 5000 suggested as the incidence for EDS, which on a UK population of 60 million suggests around 12-24,000 UK bendies. My friend has Post Polio, and commented the UK Post Polio population is about 120,000, so 5 to 10 times the size of the EDS population (this surprised me, I'd have guessed the two populations at about the same), and just as with EDS, the Post Polio peeps suspect there are a bunch of co-morbid conditions, but even with the much larger patient population no one has actually sat down to confirm the links. So if it hasn't happened with PPS, maybe it's no surprise it hasn't happened with EDS.

* And those are by no means all the neurodiverse bendies I know, I'm actually struggling to think of any bendies I know who aren't neurodiverse, and most of those are queer too...

In other bendy news, wearing an AFO seems to work just as well as the Camwalker in managing my ankle, which is randomly unhappy again, and with the bonus of not inducing a two or three inch leg-length discrepancy, which makes my pelvis happy...

Comments

[kaberett]

I keep wanting to go "I know bendies who aren't neurodiverse! ... wait. D has staggeringly non-24 sleep. E has depression." etc etc etc...

[sfred]

*nods*
Depends how broad a definition of 'neurodiverse'.

[davidgillon]

For the Worldcon group it was, IIRC, two Autism + 1 Autism Spectrum + me. I'm not formally diagnosed, but my pain management psych spontaneously started trying to figure out if I had Aspergers in the middle of the pain management assessment. He wouldn't commit to a diagnosis (not his speciality) and tells me there's no point trying to take it further as the local autism service is 10 times oversubscribed with referrals. OTOH I do also qualify via being dyspraxic - and I know other dyspraxic bendies.

The incidence of people I know with both Autism Spectrum conditions and HMS, or dyspraxia and HMS strikes me as unlikely. I'm active enough online WRT to disability I'd expect to know bendies, I'd expect to know people with neurodiversity, I just wouldn't expect them to be the same people ;)

[sfred]

Then I think most, but by no means all, of the people I know with HMS are neurotypical (with a higher incidence of mental health issues than average, but that's true of disabled people in general and of queer people in general).

[sfred]

I'm not sure of the numbers for HMS either, but it's so common in 'the' bi community and among other queer people in my social circles that it starts to look like weird correlation. I didn't know anyone else with HMS except my sisters until I got involved in bi community stuff.

[davidgillon]

The problem with HMS is you have the sub-clinical stuff with people who are clearly more bendy than is typical, but without negative effects, people who have mild issues, and people who are totally screwed - who do you count?!?

I'm the only one in the family with HMS, but sister and mother are both noticeably flexible.

[shehasathree]

Count the ones who fulfill the Brighton Criteria?

[By this definition, me and my mother are probably the only ones with full-blown HEDS/HMS, although my brothers and cousins are all more bendy than i am, and do have some issues around that - just not chronic pain (afaik). Also my mother doesn't have a diagnosis because she is in denial and thinks it's normal to have hips and toes sublux, etc.]

[sfred]

Yes, this.

[I just assumed throughout my teens and early twenties that that couldn't be my hip dislocating because hips don't just dislocate!]

[davidgillon]

As I noted in another post I historically haven't had major issues with subluxes, though my shoulder has just started doing it, but the one time my hip did it, mid-stride, that was a definite 'Whoa, what the hell!' moment.

[davidgillon]

I have my issues with the Brighton Criteria, mostly because it incorporates Beighton, and Beighton scores my majorly affected joints - hips, shoulders and sacroiliac - at precisely zero, so I worry it undercounts people like me.

[shehasathree]

Agreed. My Beighton score has been measured by qualified health professionals as anywhere between 1 and 8 over a one-year period, lol. At least the Brighton Criteria don't *overcount* anyone, though, right? Otoh, you can 'qualify' as having JHS/HEDS on the Brighton Criteria if you're over 50 and have a Beighton Score of zero, so that's a step in the right direction, at least.

[davidgillon]

(Rolls eyes!)

Now qualifying under that over 50 get out of jail free card isn't one of my favourite things!

[shehasathree]

No kidding!Inflammatory autoimmune and osteoarthritis started restricting range of motion in key joints for me in my very early twenties. "Oh, your range of motion is fine!" (No, it's not, is massively restricted, for me. But of course i didn't learn that i was hypermobile for another decade, almost.)

[shehasathree]

Possibly of interest:
https://www.facebook.com/groups/1387173441559699/

[davidgillon]

Ooh, thanks for that link, have now joined the group. I notice a link there to a BMJ paper saying 'we suspected there was a link and the stats seem to agree', so it isn't just us ;)

[shehasathree]

Oh yeah, that was me (that posted that article, and added you to the group, i mean). :)

[davidgillon]

Aha! Thank you!