h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Thanks

I'll see if I can get back to you with more info Cal, understand your reservations, I'll see what I can do. Otherwise, excellent work, well done.

There is a bit about the collagen disorders here. Scroll down to the red header of 'The genetic collagen disorders' and farther down to the header of 'Evidence that joint hypermobility and genetic collagen disorders might be unrelated'.
http://adc.bmj.com/cgi/content/full/80/2/188#SEC6

it doesn't actually say anything for certain, though as the tests were not clear

You might find certainties hard to come by in this field Cal- it's probably just good to report various theories.

*keeps searching for info*

I don't think you are allowed to do that in the guide, you have to be able, as far as I know, to back up what you are writing. This is also quite an important thing to me and I'd rather people had the hard facts about this and know where they stand rather than having a whole host of conflicting thories and going away from this confused and non the wiser

You can factually report a theory in a guide entry.

Hi Cal;

I'm aware of how hard it is to get facts when dealing with this as it runs in my family - generally speaking we're all referred to as having the benign version, except daughter number 2 who has just been operated on at St Thomas's in London, using a fairly new technique.

Basically they drilled through her hip in a triangular shape, to enable them to work on the joint socket, without displacing the hip and stretching the tendons further.

Even with the benign version daughter number 4 has extreme flat feet, which causes her sometimes sever pain.

NSAIDs were regularly prescribed for this until the recent scare surrounding heart failure in big users.

Good luck with your treatment and keep pushing - it took 2 years but we got No2 to the country's top specialist eventually.

Hi Mckay- what impact has this surgery made to your daughter?

She's still recovering, and can't do physio fully yet, but it's definately eased her hip pain to almost being pain free.

Do any of you suffer from fibromyaglia?

No - as I say we're mainly benign.

Or, to put it another way, mostly harmless?

It was mentioned to me at one point that I might have fibromyalgia, but only the once. I don't think I have the symptoms.

I had a friend who did have it, but she threw herself in the river a few years ago.

Don't think it had much to do with the fibromyalgia.

Thanks every one, I'm just really not keen on misinforming people.

My nephew who has it was digonosed last year, we noticed that his feet were rolling inwards when he was walking and he wasn't keen on having no shoes on.

I look after him as unfortunatly my sister passed away. His physio told me it was hyper mobility and asked if any one in the family had it, I didn't know because I'd never heard of it, she asked me to do the excercises on the beighton score and I got 9 out of 9 . I have been suffering with various joint pains since I was a teenager but because I'm quite sporty, they were put down to sports injuries.

I had my first physio appointment on Friday, but finding out info on this and the correct info has been an uphill struggle. and I just wanted to have something where people could at least get the basic facts.

you're doing a great job, Cal, and thanks for writing this

Have your nephew's feet been sorted out Cal? If he's only young it might be possible to correct or at least limit any twisting or misshaping of his joints while his bones are still green. That, btw, comes from various psyiotherapists / orthotists / podiatrists so I can't give you any links I'm afraid, but it might be personally useful.

He has been fitted with insoles, but I had to fight to get that, the physio referred him to the orthapeadic doc, and he tried to say that there was no evidence that the insoles would improve the rolling and that it would probably go away by itself

Propper orthapedics can make a big difference, especially to a youngster, but you need to make sure they are solid enough, when my wife got her first set she just destroyed them because her tread is so heavy, they had to mould some specially for her out of more solid material. Has he seen a podiatrist yet? They've been our biggest allies getting the right treatment for the rolling problem.