Saturday, 11 May 2013

Lies, Damn Lies, and Statistics

When I first did the lupus awareness image above, I had on the right an Australian figure.  The number seemed to me a bit low, but I'd got it from an authoritative site, so I figured it must have been fairly close to accurate.

(Of course, the place I'd love to get my information is the latest peer-reviewed medical research journals, but  subscriptions to those are a bit too expensive for someone living on a disability pension.)

After putting it up on Facebook, I was told in no uncertain terms that it was wrong and I wasn't helping our cause by lying about the numbers or minimising the situation.

Which highlights a very annoying thing about lupus.

It's very hard to track down any reliable figures.

There's lots of people with lupus. But exactly how many is impossible to know.  Even that 5 million figure is probably hopelessly out of date, I first read that several years ago, and with the planet's population increasing and no cure for lupus having yet been found, it stands to reason that there's probably far more than 5 million of us by now.

I've seen stats on death rates that vary from 10 per cent to 30 per cent.  Twenty-nine per cent seems to be being shared around a lot at the moment, but I can't find where the figure originated or how it was calculated.  Not all lupus deaths are listed as lupus deaths.  Some are listed as renal failure, or some other effect of lupus, without the cause being recorded.

What can I accurately tell you about the number of people who have lupus, and lupus death rates?  There's a lot of us, and quite a few of us will die from lupus. Well that's definitive, isn't it?

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