I will not reproduce well known key facts on my blog. I will always refer to my recommended sites. Take a look at my favourite sites. I will, however, make specific comments where I feel I would like to promote discussion or warrant further explanation.
For a good brief on Motor Neurone Disease please see “What is MND?” from the excellent Motor Neurone Association (MNDA) website in the UK.
Top of my list for discussion and awareness are MND statistics and their use. It is the reason for the naming of this blog.
*please note that since writing this page the MND Association of England and Wales has updated the official statistics to now use the life time risk of up to 1 in 300! I still include my facts page to explain why this change was made.
The bare numbers for MND are that about 2 in every 100,000 of population per year develop the disease.
Lets examine this statement.
- This fact is a fact i.e. accurate.
- However, does it tell the real story and is it the most powerful and appropriate figure that should be used when trying to raise awareness of the disease? – Answer NO.
- What it means, is that for every 100,000 of population, every year, 2 people are diagnosed.
- The fact is almost always incorrectly quoted and misunderstood as 2 in 100000 people will get the disease – WRONG. Take a look at Colin Pritchard’s article in the Guardian to see the mistake in action.
- Every year, each of us unaffected still exists in the population. So our chance for a lifetime is cumulative.
- In addition, your chances increase with age (there are peaks in your 50s and late 60s).
- Virtually no one in their first 20 years develops the disease.
- The population is always being fed with new born, thus lowering incidence numbers.
- All other major diseases today are expressed as a lifetime risk and not incidence statistics.
So what is my point here?
Your lifetime risk, i.e. the real risk of developing MND in your life, is estimated at about 1 in 400!!!!!This assumes a lifetime expectancy of about 75.
WOW that is scary!
If you want to know more and see the detail, please read on, and if you want even more dramatic stats skip straight to the UK Office of National Statistics on death causes in 2013 and 2014 below.
The following peer reviewed papers provide the core evidence, and are developed from several population studies.
ONS OFFICIAL STATISTICS – CAUSES OF DEATH 2013
And now 2014 (just published)
Simple analysis of this shows for 2014 the chance of a death being caused by MND was 1/278 and for deaths under the age of 75 the chance was 1 in 155!
The death data is probably more indicative of the real chance, ie about 1/200. But remember death cause may even hide further cases or deaths from respiratory MND causes may be recorded as pneumonia so further understating the real risk.