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Les discusses: What is rare?

Les discusses: What is rare?

I was thinking about this the other day when a spot on the TV news talked about a tragic incident where a boy had been struck by lightning outside his school. Rounding up, they said that this was a very rare incident: there were 12 cases of lightning striking individuals in the UK each year of which 3 usually ended in fatalities. I then compared this with my own condition, MND, which is described as a rare disease. Some 5000 people have MND in the UK, and about 1500 die each year. Sounds a lot less rare than being struck by lightning.

But is it one of these occasions in which the use of English can set the importance we attach to problems and hence the priority with which we attack them. If 1500 people per year were killed by lightning strikes, how much would we be spending in looking for an answer? The latest road casualty fatalities for the UK are not that dissimilar to those dying from MND in a year (1800 in 2010) yet I have never heard the word rare applied to road deaths and injuries. And think of the many hundreds of millions, even billions of pounds that have been spent on road safety by not just the department of transport but by all the car manufacturers as well.

What does this tell us? That the use of the word 'rare' is allowing the focus to be taken away from MND as being something that we can do little about, but which isn’t too big a problem to worry about anyway. I bet if the amounts that had been spent on road safety had been spent on MND we would be a lot closer to an answer by now!


  • I so agree with your blog.  I have been thinking along the same lines myself.  My husband has recently been diagnosed with MND (following misdiagnosis of acid reflux and then myasthenia gravis). 

    I am dismayed that there has been no advance in suitable medication for about 20 years.  Would it not be possible to lobby parliament (in the way that organisations such as Avaaz does).  Surely if we could muster all those who are suffering today something could happen to speed up the whole system of being able to utilise new drugs that might help the condition.  As you so rightly say, sufferers at the moment have virtually no hope so I am sure many would be willing to try something that hasn’t gone through every single clinical trial if there is even the slightest chance that it could help.

    I talked to my husband about the stem-cell trials that are currently taking place in some countries and I read recently of someone in America who has been given this treatment and he has reacted so well that doctors even questioned his original diagnosis - which turned out to be correct!

    Thank you so much for all your efforts.  It is really heartbreaking to see my husband deteriorating and I feel so frustrated that there appears to be nothing I can do to change the situation.

    Please do keep me informed of anything new and also do let me know if you think there is something useful I can do.

    Take care, my thoughts are with you and your family.

    All good wishes


    Joy 17-11-12 12:20pm

  • We have just learned of your campaign through reading the Sunday Times article about the Empower campaign - how wonderful to not give in to your horrible illness but to use what you are suffering to help others.  My husband Peter has recently been diagnosed with Multiple System Atrophy (accompanied by Central Pain syndrome), after years of uncertainty about the cause of his symptoms.  His pain is treated with prescribed but unlicensed medicines (his GP made him sign a contract!) and he is told by the National Hospital for Neurology that there is no treatment for his MSA and that he will progressively deteriorate and ultimately it will be terminal.  We want to offer our support for your campaign and he (like many others, we are sure) would willingly undergo trial treatments, rather than simply wait to become increasingly disabled and then die!!  We are sure the MSA Trust is probably aware of your campaign but will draw their attention to it.  With very best regards.  Alison and Peter Martin.

    Alison Martin 10-02-13 3:11pm

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