Thursday, December 17, 2009

Rarer than hen's teeth..

"Think horses not zebras" is a saying taught to medical students. Basically, like Occam's razor it is to remind them that the simplest explanation is the most likely explanation, and that tying yourself into knots chasing down rare conditions is usually a waste of time. The conditions considered 'too rare' to deserve proper medical education are legion, so most are skimmed over during medical school.

Ehlers Danlos Syndrome
has it's own special place amongst the 'rare disorders doctors are told they're unlikely to ever see'. My EDS diagnosis completely bewildered an anaesthetist friend of mine, who, despite only ever having seen the old fashioned photos of stretchy skin and hyperextended joints whilst at medical school had always known I had EDS as apparently 'you can tell just by looking'. He's right, you can, and how I fell through the diagnostic net no-one will ever know. It was so obvious he just assumed I knew too and didn't want to talk about it.

Yesterday, after receiving repeated messages from my Sky box that the sky would fall in and stop sending me magical telly box pictures if I didn't get a new viewing card I finally got round to investigating the digital switchover help scheme. There is a point to this, honest...I'm just struggling to get my oxycontin deprived brain to remember what it was. Um. Oh yeah...

So, I phoned the digital people and spoke to a very nice lady. As I'd managed to call the wrong number we went all round the houses before getting to the point that I have a disability and so qualify for some forms of help from this scheme. Leaving aside the merits of tax payer funded digital TV equipment I'm very grateful that a nice man is going to turn up on Monday and sort it all out. Technology is not generally considered to be my friend as the Best Man would happily tell you all.

Whilst I was explaining the disability issues to the nice helpline lady* she mentioned it sounded like something her young niece had. We chatted some more and it transpired that she has two nieces with varyingly severe degrees of hypermobility. The hypermobility had been noticed by doctors, but they were continuing down the misinformed route many doctors do and insisting it wasn't the source of the endless injuries and pain these children were having. I was able to point the lady in the direction of relevant medical information and advise her how to get the children referred to the bendy specialists.

Hopefully these children will be spared the more disabling aspects of Hypermobility Syndrome/Ehlers Danlos Syndrome by early diagnosis and lifestyle management. It would be wonderful to think that the NHS and benefits system would also be spared the burden caused by the lack of timely diagnosis but until medical education about 'rare' conditions improves that is sadly unlikely.




*BTW, the digital switchover people may be causing mass confusion with the changeover but they seem to have installed a fairly impressive level of disability awareness amongst their staff.




2 comments:

cogidubnus said...

Hi Bendy

You just ain't going to believe what a small world this is...was talking on the bus this morning with one of my opposite numbers from the local Council...about twenty five years old I guess (I've known her five)... and she's just been diagnosed with hypermobility...

"So you're a bendy-girl then says I boldly..."oh yes" she says..."though they're not sure yet exactly what it is" ... She'd not heard of ED so I referred her here...hope you don't mind...

D

cogidubnus said...

Oh...and that Digital changeover...having fed my address/postcode into the website, I am informed:-

Digital Channels now available to you:- NIL

Digital Channels available to you after the changeover:- NIL

As I live in a fair sized holiday resort somewhere in the allegedly prosperous south east of this sceptered isle, (and not on some remote croft in the Orkneys or Outer Hebrides), I am somewhat disappointed in this...

Will I still have to pay a licence fee to receive sweet FA, just so's I can play the odd video or DVD ?

They can try to chase me!