Good News?

The English language and what we mean. It is so easy to put the wrong meaning into a statement.

I called this post “Good News” when really it is not good news at all, in fact it is the exact opposite. It is really very bad news.

Those of you who kindly follow my blog, and many of you who know me, are probably aware of the reason I started the blog.  It was specifically designed to raise the awareness of MND/ALS. In particular, before I developed this disease I truly thought it was very rare and as a consequence just didn’t think it would happen to me.

After I was diagnosed, I was staggered to find out it was not rare at all. In addition, and importantly, the statistics being used, although correct, didn’t show the true extent of the disease. The end result was that to the outside world it appeared to be a disease that perhaps only affected 1 in 50000. I won’t go into the detail in this post, but please take a read of my facts page to get some of the information that came out of the woodwork as I dug deeper. I found that around 1 in 400 of us, in our lifetimes, would develop the disease. Hence my blog name.

My news today, is that as of last Friday, the Motor Neurone Disease Association (MNDA) has updated the official statistics with a new lifetime risk statistic, which states that up to 1 in 300 of us will develop MND in our lifetime! This has replaced a rather technical incidence statistic, which was always misunderstood.

See the MNDA’s brief guide to MND page to see the official new statistics.

So it’s not good news at all, but it does highlight the real destruction of this disease and I hope will help spread awareness further to raise funds for research as well as central government research funds. The sad fact is that as more of the population survive other curable diseases, this risk will rise further as a proportion of survivors will unfortunately develop MND. I remember when HIV/AIDS was very public, and it looked like there was no hope. We now have effective therapies. I believe we will get there in the same way with MND but only with funding.

I have just had a couple of people ask me about my blog title, ie onein400. “Hey Lee are you going to change this in the light of the up to 1 in 300?”

I say, “Do you know what hassle it is to change an Internet domain name etc!?” So no, I can’t change my alias, I am onein400! It is like asking Batman to change his name!

Anyway, I do now need to update my facts page with the new details.

Thanks for supporting my blog, and I will be back to my normal mischievous posts later this week!

Under 3 weeks to Christmas everyone!

Lee – aka onein400

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2 Comments

  1. Sylvia Buxcey wife of Kevin says:

    I passed details of your blog and what 1:400 meant to the neuro science team at Addenbrookes and told them it was high time they took a look at creating credible metrics whilst also telling them that my darling husband died last Thursday 3rd December 2015 after being diagnosed only on 30th May 2014 with upper and lower motor neurone disease. It annoys me that if they published these facts properly more might be done to find the cause and help those suffering.
    He died because his throat muscles had deteriorated his swallow and the phlegm he had inhaled caused inflammation to his lungs and because his cough mechanism failed him he did not clear his lungs and he fainted as oxygen was insufficient. He never knew, he just fainted and quickly slipped away.
    My darling Kevin is no longer suffering his awful fate and I am almost rejoicing that but it hurts so much to have lost him.

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    1. onein400 says:

      Sylvia, I am so sorry for your loss. As you know, there is so little awareness of MND that we have to raise it. With the official stats now being published, I am hoping there will be more publicity and we can bring the end of this disease closer-Lee

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