One Show

[DeeNJai]

Hi
Did anyone watch the One Show tonight there was a woman on there that EDS and she had a canine partner. Hopefully that might help others with the condition, Sorry I didnt get her name.
Dee

[Chloe♥]

Going to take a guess and say it's probably the same lady as in this daily mail article (linky)

Which I read almost entirely because I saw it and said "I bet she has EDS"

[nemonie]

Hiya,

I saw it too and am also rubbish in that I can't remember her name.

Nemonie

[Superstottie]

I'm waiting for it to come onto iPlayer!

[sheppeyescapee]

Me too I missed it because I was watching the welfare reform bill coverage.

[FunkyPhysicist]

The only day we didn't have it on in the background! lol

[WinonaLemonade]

my sister was asking me questions last night about what i'd be like when i was older and saying that she'd help me with things and it turned out she'd seen this on the one show and they said it was degenerative.

[Blaadyblah]

http://www.bbc.co.uk/programmes/b01c2yjk at 12 minutes.

[Eloise]

I think it was great - it will raise awareness of EDS, and because the dog is so wonderful people will see it in a positive way

[RainbowsButterflies]

That might be one for the hubby to watch!

[Fluffym]

Thanks Blaadyblah for the link, saved a lot of searching for me. It mentioned the condition as being degenerative. I did not think this was the case, can anyone clarify please????

Fluffym

[Blaadyblah]

EDS3 is not degenerative in the progressive sense, like say MS or MND - but some people develop complications secondary to their EDS - I'm one of them. That said, it gets worse and better, very much a few steps forward then a couple back. Good days and bad days but no, for most people EDS is not degenerative - the collagen defect remains stable rather than becoming increasingly stretchy throughout life if that makes sense?

Degenerative disc disease for example is the wearing away of vertebrae over time - HMS is degenerative in this sense - damage over a period of time will create scar tissue in the affected areas which can cause problems at old injury sites but the vast majority will be injured, then heal, then reinjure ad infinitum.

[barkingmad]

ditto BB

[RainbowsButterflies]

That was pretty much my understanding too. I would imagine that every time we injure ourself, we will do *some* permanent damage, whether that be scar tissue or grinding away cartlidge (sp) or whatever - that's all part of the normal aging process. Because we injure ourselves so much more often, plus we heal poorly, I would suppose that would cause a faster degeneration. I was also under the impression that you didn't tend to recover 100% after bad flares, so again, there will be a cumulative effect there (or have I got this wrong?)

Plus there's all the secondaries like FM which I imagine are pretty hard to cure...

[barkingmad]

No i don't think you are necessarily wrong. In theory the later the diagnosis and proactive management then there is a higher risk of disability. Not all of it will be permanent but there is an increased risk of poorer healing and additional problems which may be more difficult to treat or manage. I.e. Regular elbow injuries may lead to impingement syndrome, treatment options are sometimes llimited due to poorer outcomes in our patient group for example associated with surgery.
Then you have to factor in complex psychosocial issues and the fact that a poorly managed long term condition carries a higher risk of additional long term conditions.
Does that make sense? I am a tad tired! In its purest EDS doesn't have to be disabling or progressive its everything else which gets in the way.....and some of us are more severely affected than others and/or we have other burdens to carry and/or different coping skills. It is a complex condition which can complicate everything else! X