Support Groups, Surgery, and Collagen

I wrote up a long entry about EDS – what it is and how it affects sufferers including me – and posted it as an “About” page as it is kind of stand-alone and is also too bloody long for a standard post.

Ever since my diagnosis nearly ten years ago I’ve dealt with my bête noir all on my own. Oh I’ve had medical help and in recent years actual real life support from Tux, but because the condition – and awareness of same – is so rare I’ve never had access to a support group, never even met another person with EDS, never spoken with another person who knows precisely, intrinsically what I experience; who manages the same escalating condition; who has so far survived all the quality-of-life bullshit, and so on.

Recently I was googling for any recent research [very much like the proverbial needle; except proverbially you know the needle is somewhere in that haystack, and you can’t presume the same about EDS research] when I came upon a link. A link to an Australian EDS Support Group/Message Board. Australian. Not the UK, or USA, or Canada.

I think that must have been the fastest registration and login ever attempted. It’s a great group, too, a real mix of ages and situations, and it’s pretty lively, considering the small group size. There’s been some very interesting threads/posts already; the best one, from my point of view right now, is all about exchanging ideas and tips to make life easier and more streamlined, more independent and mobile. Many of these tricks I’ve worked out myself over the years, but how amazing would it be if I’d just been diagnosed and there was this group, right there? That’s the true beauty of the internets for you – that not only is it amazing technology, amazing for education and the increase of knowledge, also how it brings people together who otherwise would not have a snowball’s chance in hell. Forget – this is much more romantic!

So yeah, it’s an exciting and new experience, communicating with “my people” like that; what I find most fascinating is not the opportunity for “memememememe” posts [my medication, my pain, my shoulder, my specialist, my surgery] but the chance to ask questions – “youyouyouyouyou?” So very very much more interesting and informative. And believe me I’m asking questions like mad. Others are less affected than me; or worse; others were diagnosed early; others had the same experience as I did; others – most or all of them – have immediate family with EDS. Some have medical knowledge to rival a neurosurgeon’s; others can’t spell or punctuate [just like any forum in that respect].

Something that immediately stands out and that I’ve been chewing over is that I’m going to need surgery; in fact it’s a bit of a miracle I haven’t required some major surgery already [possibly I may require and again, the need/diagnosis has been missed]. I’m certainly not about to rugby tackle the nearest spine surgeon, shrieking “Do me!” – but then again, what if it would help? Make a big difference? Would YOU go through a cervical spine fusion “on the off-chance” [that you would eg, experience a lessening of screaming agonising pain and be able to drive a car again]?

I get cross with my mother, who insists there’s going to be a cure found within the next two years, because she really is living in la-la-land and there is absolutely no scientific basis for her conviction – rather, science indicates a big “no f’ing idea”; I don’t expect a cure , but have often set up the following rhetorical questions –

[i] If there is an enzyme which dissolves collagen [there is – called collagenase] then why cannot the reverse be engineered?

[ii] Why can’t collagen type II [or whichever one of the 27 types is out of balance, I think it is II] be manufactured?


and would you believe, Pharyngula posted some very very fascinating information on Collagen II on his blog a few days and I just now read it? Here None of the scientists commenting had any concrete answers, apart from thinking it would be cool. Yes. Yes it would be cool.

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