Is MND (ALS) really a rare disease?

MND is one of a number of Neuro-degenerative diseases, and one of the most feared conditions. Neuro-degenerative diseases are on the increase, and in the UK alone our Health spend on such diseases increased by 40% in the last 3 years. This is only going one way. There is a lot of science behind this and I write about this in occasional serious posts. Take a look at my Research posts.

Of course, the disease was in the public eye 2 years ago with the Ice Bucket Challenge and the Oscar winning movie “The Theory of Everything” starring Eddie Redmayne playing Stephen Hawking. A sudden surge to charity funds in 2014 has helped move research along, but being brutal, we need that every year. Compared to Cancer charities (there are many), the only Charity for Motor Neurone Disease (the MND Association) raises a relatively small amount of £17M a year to fund research and care.

Stephen Hawking is actually a very rare example of MND in that he has survived for over 50 years. Most sufferers succumb to the disease in a few years after losing the ability to walk, move, talk, eat and finally breathe in just 2 years!!

But why is it still considered a “Rare” disease, when it quite clearly is not and affecting between 1/300 and 1/400 of all us in our lifetimes! To put that in perspective that is 3 children in each and every school in the UK today will in their lives develop MND. Unless, of course, we can develop a therapy. Currently there is no stopping those 3 children in each and every school right NOW, going on to develop MND! Chilling?

For those who love statistics, here is the reason why MND is considered rare.

Like everything in life, words are important. Although there are different definitions around the globe, the European Disease definition for a rare disease is one where less than 1 in 2000 of a population are affected. And herein lies the problem. As discussed on my facts page, using a percentage of current population (prevalence) is not really suitable for a disease that simply kills. The severe prognosis of MND means that only 5000 people are alive with the disease in the UK at any one time!! Imagine a disease that infected 2000 a day, but only had a life expectancy of 1/2 day. The prevalence would never rise high, and might itself be considered rare. This is an extreme example but it highlights the problem with defining MND as rare. If, for example we could double the life expectancy of MND sufferers from 2 to 5 years to 5 to 10 years, the prevalence would rise dramatically. Makes you think yes?

Now that’s the nasty bit out of the way! If you are new to my blog, please be assured that most of what I write is uplifting!

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One Comment

  1. Corinna Reilly says:

    I look forward to the next update

    Liked by 1 person

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