http://www.bbc.co.uk/news/uk-england-kent-26856137

http://www.dailymail.co.uk/news/arti...-recovers.html

[Llynnyia]

Poor lady. I was denied both unemployment and disability. why? catch this I am to disabled to work but not enough for disability, but because i could not accept any job available and i could eventually, maybe, hopefully , find a sit down job i didn't qualify for unemployment. Roflmao what a load of malarkey people really need to know more about this condition not only the doctors but policy writers. They have room to put fibromialja (sp?)on then books why not RSD?

[Tashi]

I think the reason why there is no recognition, is that they keep changing the name. In 1984 it was decided to be RSD. That was getting some attention until it became CRPS.
Before it was RSD it was Sudasacs Atrophy. I can't remember how it was spelled, but is irrelevant now anyways.

Fibro had 1 name even when they didn't know what it was.
This disease/syndrome calls progress by changing the name.

The RSDSA assoc was started by 2 families with children that were diagnosed with RSd. We had real surveys then to try to find a common link. Now it is corporate with doctors from Medtronics on the board.

They are not interested in a cure, only in making $$$

[Llynnyia]

Originally Posted by Tashi

I think the reason why there is no recognition, is that they keep changing the name. In 1984 it was decided to be RSD. That was getting some attention until it became CRPS.
Before it was RSD it was Sudasacs Atrophy. I can't remember how it was spelled, but is irrelevant now anyways.

Fibro had 1 name even when they didn't know what it was.
This disease/syndrome calls progress by changing the name.

The RSDSA assoc was started by 2 families with children that were diagnosed with RSd. We had real surveys then to try to find a common link. Now it is corporate with doctors from Medtronics on the board.

They are not interested in a cure, only in making $$$

Sometimes it really sound like it. All the treatments I have been researching are very expensive and they just treat not cure and nor have definitively found the cause of it. But just look at diabetes no cure either. So I think that proved your point.

[Brambledog]

Thanks Kim.

Oh dear. I made the mistake of looking at a few comments on the bottom of the page.....one of the idiots said that if it can be treated by physio, painkillers and counselling then that means its at least partly psychological, and that she should start thinking of her poor son, get a grip and get a life...and get back to work. And that plemty of people have pain and dont whine on about it. That she had likened it to labour pains and shouldnt be so stupid. Omg I was a bit tempted to sign up just to comment!!!

I find even the expert docs comments a but vague and easily misinterpreted. I wish these docs would understand that public perception is everything with a rare condition, and that they need to be very precise about what they say. They said about 70% of sufferers being cured, and mentioned there's a problem with speed of diagnosis, but they didn't explicitly say that the vast majority of people diagnosed with CRPS who get better do so within the first few months, and that once the sufferer has had it for more than a year, the condition affects the tissues permanently and a cure is extremely unlikely.

Sigh. Will it never end....

Bram.

It's always best not to read the comments in the Daily Mail. Actually, its best not to read the Daily Mail at all. I only found the article because I have a google alert set up. It would have been awesome to have a good description of CRPS given how large the readership is though.

Originally Posted by Brambledog

Thanks Kim.

Oh dear. I made the mistake of looking at a few comments on the bottom of the page.....one of the idiots said that if it can be treated by physio, painkillers and counselling then that means its at least partly psychological, and that she should start thinking of her poor son, get a grip and get a life...and get back to work. And that plemty of people have pain and dont whine on about it. That she had likened it to labour pains and shouldnt be so stupid. Omg I was a bit tempted to sign up just to comment!!!

I find even the expert docs comments a but vague and easily misinterpreted. I wish these docs would understand that public perception is everything with a rare condition, and that they need to be very precise about what they say. They said about 70% of sufferers being cured, and mentioned there's a problem with speed of diagnosis, but they didn't explicitly say that the vast majority of people diagnosed with CRPS who get better do so within the first few months, and that once the sufferer has had it for more than a year, the condition affects the tissues permanently and a cure is extremely unlikely.

Sigh. Will it never end....

Bram.

[Brambledog]

LOL that is sooooo true!!!!

I've always hated the Daily Mail....they are masters at whipping up a frenzy about nothing, getting their facts all wrong, and glossing over the actually important bits. As a scientist, it makes me grrrrrrrrrf. My parents sometimes have it, and I can't even look at it - or I know there'll be a heated disagreement on the way

I'm so relieved to hear you aren't a subscriber lol.

Bram.

[AZ-Di]

I was glad to see this article for the 'awareness" factor, but that poor lady!

I'm in the U.S. so it may not translate, but wouldn't a government
employee at least qualify for some sort of short term disability? Or did
they just outright fire her?
Don't get me started about the misconceptions out there!
THERE IS NO CURE! Remission may be possible, but is far more likely in
the very young from what I understand.
Heck, we don't even have definative drug(s) to specifically treat this.
Every drug tried on me is just "off label" & intended for something else.
I'm happy nerve blocks work for me to help pain, so function is minimal,
but certainly not restored.

[visioniosiv]

"THERE IS NO CURE! Remission may be possible, but is far more likely in
the very young from what I understand."

Open question: why is remission far more likely in the very young?