New research proposal!

[blauwefox]

I had my appointment with Prof Grahame this week, and after discussing my health for about 10 minutes, we ended up talking about my work (I'm a bio-physicist doctoral student) and how EDS/HMS are always under diagnosed.

we started bouncing some ideas around, and ... needless to say some fruitful ideas came on.

Basically, I explained to him my interest in possibly designing a medical diagnostic tool that could possibly measure the collagen content in tissue. I wont bore you all with the techno details. The point is, if and when I have a working prototype built, I would like to test it on some EDS/HMS people (apart from and including myself!), and the best place to ask is.... well.... HERE!

errr... mods, I hope I'm not going over-board. Feel free to lock this thread if you find this post inappropriate! I just got so excited after talking to Prof G and the possibility of collaborating with him on something that interests me and would benefit us!

How can I refuse working with a Prof who giggles at our feet clapping? it was very cute!

[gila]

xxg
oh and I love your 'once a lonely nut mighty oak' line

[Retro]

Hi B,

Don't see any issues with having this post here.

Isn't our collagen wonky as opposed to not having enough?

Lindsey - Site Admin

[blauwefox]

yeah, the collagen is wonky because it isn't "cross-linking", and therefore it has a different chemical signature. My idea was to find out the ratio between functioning collagen and wonky collagen, to see if there's a way to quantify your hypermobility so you can tailor your excercise/rest period etc.

A bit like, the quantity of anaesthaesia you need depends on your weight and metabolic rate, and when your surgeon wants you to recover from sedation. i feel that if you can have a value of functional/non-functional collagen, you can tailor your activities so you can maximise your quality of living without aggravating your pain.

does that make sense or am I babbling nonsense again

Edit to add:
Plus it would be pretty cool if every GP can have his or her own Collagenometer, makes diagnosis quick and painless. I remember how frustrating it is going to the GP since I was 8 or 9 with joint pains, and all diagnosis are either "growing pains" or "she's making it up". Remember the old days when diabetic patients were under diagnosed? And now all the doctors have to do is do a urine test!

[mummyto2girlsx]

Excellent idea

[sarahh]

Excellent good on you.

Sarah x

[Eloise]

I am always willing if you want a guinea pig Great idea

[Blaadyblah]

Very, very cooool...

[blauwefox]

dont get too excited guys... i havent even written my research proposal! And there's no guarantee that this gizmo would work to start with. But at least I'm trying LOL

Now, where did I put my FLux Capacitor.......

[Retro]

Hi again B,

Of course, I haven't got a clue about the science behind this but, isn't all of our collagen wonky?

Lindsey

[blauwefox]

Thats what prof G and I are trying to find out. Is it ALL wonky for everyone, or maybe for some of us its only at certain ratio. That might explain the different symptom distribution.

My brother never had serious sports injuries despite his clumsiness. He cant sublux his fingers, but can clap his feet.

Not wanting to give you a biology lecture, but some people are essentially chimeric in nature - i.e. some parts of the body have more of certain genes expressed than others. I'm just wondering if there's a way to quantify the wonky-collagen:normal-collagen for the different body parts so we can be more careful of what we can or cannot do.

Think of it more as an analogy to a collagen version of X-ray. If you go to the radiology dept to get your calcium levels measured, the level is probably different for different parts of the skeleton, depending on the load and exercise that particular bone/joint has. Like right now I'm particularly interested why my left shoulder tends to dislocate more than my right, eventhough I am ambidextrous and use both my sides equally. Could it be that in my right side the ratio of normal:wonky is different to my left side? If so, and if some day the clever docs managed to devise a gene therapy/tailored protein treatment wotsit, having a rough figure of wonky:normal will help with local dosage injection.

I better stop before this turns into a bio-physics lecture! LOL

By all means, ask me questions in this thread. It helps me to find holes in my theory/proposal. Man, i wish prof G can read all this. He'd love it! He's such a lovely chap *still giggling at the memory of him trying to clap his own feet without much success*

Retro, I'm thinking of going to scotland in July for a weekend break, maybe we should meet up and discuss more!

[boss5]

just wanted to say good luck
i dont really understand what your talking about thow
ive got pictures going around my head of a comp screen
with ladders on in different colours all
spiraling together going around in a circle
i think some are all wonky and you want to
sraiten them wont this take more than a check in gp surgery
how do you messure the collegen is it to do with how many lines on the ladder
or have i got it all wronge and thats dna
im really not sure any more what im talking about
im going now
very good luck with everything
please keep us opdated
and let me know if i got it all totaly wronge
thanks
from kellyxx (boss5 )

[Retro]

Retro, I'm thinking of going to scotland in July for a weekend break, maybe we should meet up and discuss more!

depends on where in Scotland you're planning on going

Lindsey

[gila]

as you dont mind...some more non-med-mind 'spanner questions/ramblings'

I can see your meter being v helpful indeed with 'quantifying hypermobility' and it would be totally fab to have a machine to simply and clearly 'medically prove' a collagen defect!
but aren't there lots of different types of poss defect and in the case of HMS and HEDS the exact defect isnt known yet???? and wouldnt you first need to know what exactly the defect is before you can measure it?

and I cant quite see how this 'meter' would 'quantify and qualify' the syndrome, particularly all its non musculo sceletal probs?

as far as I'm aware there's no direct co-relation between 'amount and extent' of hypermobility and 'amount and extent' of syndrome/probs... i.e. there's peops with a 9/9 beighton score that are fine and healthy and peops with a 5/9 that are disabled by chronic non injury pain, autonomic dysfunction etc., (yet dont necessarily suffer the mechanical probs of dislocations).

also I feel there is no difference in my actual hypermobility pre/post becoming 'syndromed'.
well, my right knee has become laxer over the years, but imo that is down to years of overextending, end of range usage...
and as usage of joints and muscle condition have a def influence on mechanical dis/ability... this alone would throw a spanner into 'quantifying/qualifying' probs just by ratio of right/wrong collagen...no?????

so I also cant see how the right/wrong collagen ratio could help "tailor your activities so you can maximise your quality of living without aggravating your pain."
unless the meter could help find that chronic n i pain/autonomic dysfunction are due to minute, not outwardly measurable/seeable increase of wrong collagen... but that would be difficult as peops would have to have had collagen measured BEFORE becoming syndromed...
?????????????????????????????
and sorry but I cant refrain from once again mentioning my simple mind theory (which I feel was somehow strengthened by prof bird's 'hormonal/gynae probs prediction theory') that a lot of the syndrome's probs are not due to hypermobility/wrong collagen per se, but that hm/w c makes us more susceptible to some other 'culprit/mechanism' or 'culpritS/mechanismS' that make the syndrome....
?????????????????

but I could def see how 'meter' could help 'just hypermobile not syndromed' peops try to avoid mechanical damage by tailoring activities...
but like in my case of the syndrome where the main disabling factors are the chronic n i not understood pain and autonomic dysfunction... ?????????????
xxg

[blauwefox]

excellent arguments gila. My immediate interest right now is more to devise something that could readily detect certain collagen signatures, and in the long run get a tabulated data on possible ratio of certain signals and see how it correlates with patients' description of symptoms. There's been some work on this but its been only with rheumatoid arthritis patients (to see correlation between what patient report their pain is with respect to the chemical signature when the probe is placed on the affected joint).

I'm just wondering if the same could be done with HMS/EDS. Prof G has done some work on this, but using ultrasound. No correlation was found in his studies though, but that is probably to do with the fact that ultrasounds cannot differentiate between same tissue with only minute difference in molecular structure. Our initial plan is to use light of different frequencies that is specifically tailored to match the different classes of collagen, so it would be more specific.

I will say upfront that this will probably take several years of work, and no guarantee of success. But that is the nature of the Beast (ie medical research). we just keep on trying until we find something that works! And until we do, we ain't givin up

Retro, whereabouts in scotland are you? I wouldnt mind heading your way if there's interesting stuff to see where you live!