How common is HMS ?

[wobblywoo]

Hi all

I wasn't sure where to post this so it's here

I am just wondering what percentage of the population has hypermobility syndrome, no one i know has ever heard of it.

thanks
woo
x

[l00pyp0u]

HI, Woo,

Having done some reading for my referral statement, HM is 1:5000, and there are 2 views on HMS 1:150,000 and 1:300,000, which one is acurate I don't know, but the 1:150,000 was a study done in the UK not so long ago, and they found 4 families displaying symptoms, so that's where the figure came from, can't remember where it was though.
Whether the 1:300,000 relates to world population I don't know, so even with the lower figure, it is still quite rare.

Hope that answers the question,

Lou

[wobblywoo]

Thanks lou

I forgot where i posted this question

I found in an EDS article
"How common is Ehlers-Danlos syndrome, hypermobility type?
The hypermobility type is the most common form of Ehlers-Danlos syndrome. It may affect as many as 1 in 10,000 to 15,000 people." which ties in with your HM figure but not the HMS one

Not sure if i'm allowed to post the link so PM me if you want it

woo
x

[WinonaLemonade]

yeah, i'm not sure about the 1 in 150,000 to 1 in 300,000 because there are about 250,000 people in plymouth so that would mean that statistically i would be the only one but i'm really not.

[hannah]

Yeah, I definitely don't agree with the 1:150,000 for HMS - I live in a small town and know of at least 2 others with HMS, plus 2 of my sisters and 2 of my brothers! Personally I'd go for the 1:10,000 or even more.

[Stone]

I think there's a fair few hypermobile people, just not that many with the syndrome.

I wonder about my gf sometimes, she clunks a fair bit and has blue sclerae and translucent skin but is nowhere near as broken as I am!

Stone

[jax]

Stone,

So how do you know when it's the syndrome? It's hard
to tell. What do you think?

[Stone]

She doesn't score highly enough on Brighton or Beighton. Simples
(yes, I know it's not that easy!)

I would say it was the syndrome when it causes you real problems - if you can work around it then it isn't. Does that make sense? Both sets of criteria are kinda based around functional things so if you have trouble doing things then is that the start? Not sure

Never really asked the question because I'm pretty sure I have EDS rather than HMS as I have skin involvement. Interesting question though!

Stone

[iNeko]

I think I'm in the same boat Stone, I have some skin involvement (I can pull the skin on the back of my hand over an inch away, and my skin bunches up when I rub my hand over anywhere and feels incredibly loose, my hair is also 'impossible' to cut at the crown because of how much it moves! People have always said I still have some growing to do, but I'm 23 now, I can't grow that much more!), I also bruise easily and my skin is very, very easy to cut (shaving, I'm looking at you!) So I think I'm more likely to have EDS than HMS, but I have no idea where to start with the differences between the two!

On topic, I've heard that it's 1 in 15,000 - but I can't remember where I got that from!

[WinonaLemonade]

my skin's stuck tight to me, i can't pull it up at all but i still have problems with it breaking, scarring and not healing properly and it has a floury texture. it's also thin and i get easy bruising. the difference between me and the rest of my family who are affected by hms is that they're all really tall with marfan habituas but i'm tiny . my arm span is a good few inches longer than my height though.

[parent]

My daughter was diagnosed hms but she can pull her skin away from various parts of her body, she also bruises easily and when she cuts herself it takes ages to heal and always leaves scars. So is this EDS type 3? i don't know i'm confused!!

[gila]

re the EDShypermob or HMS... there is an ongoing debate about "is it-isnt it the same" also in the medical community (worldwide)-
and the debate will keep going as atm there are no tests, no irrefutable scientific proof either way-

see also these two threads:
viewtopic.php?f=3&t=4691&hilit=difference+between+EDS+HMS&start=45

viewtopic.php?f=4&t=2358&p=29269&hilit=difference+between+EDS+HMS#p29269

xxg