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Thread: 1 in 400?

  1. #1
    Forum Member nunhead_man's Avatar
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    1 in 400?

    Good morning all,

    Is it my imagination but was somebody around here suggesting that motor neurone disease affects one person in 400 in the UK population?

    I ask because I was looking at this the other day....

    https://www.mndassociation.org/resea...thern-ireland/

    Where it says that the expectation is that there are about 5000 people diagnosed at any one time which is obviously much less than one in 400 given UK population is about 60 million?

    Can someone explain where the one in 400 comes from?
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #2
    Forum Member Kayleigh's Avatar
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    Hello Andy. I have read on the MNDA website and on Lee Millard's blog that it is now 1 in 300, rather than the 1 in 400 quoted previously to that. Best wishes. Kayleigh
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  3. #3
    Forum Member Terry's Avatar
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    Hi Andy;

    I don't want to think about it to much but the 2 figures could marry up.

    5,000 people diagnosed are 1 : 400, so times them together it Makes two million people.

    But Mnd people live on average 3 years and normal life expectancy is around 75. So during a normal life span 75 divided by 3 mnd people gives you 25

    If you then multiply 2,000,000 by 25 you get 50 million.

    Quite close really.

    If you understand my logic, you too will need some aspirin too.

    Love Terry
    Last edited by Terry; 16th November 2018 at 14:39.
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  4. #4
    Forum Member nunhead_man's Avatar
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    Good afternoon Kayleigh

    Yes I think it is this - https://onein400.com

    Or rather – this https://onein400.com/facts/

    I will have to read it carefully to work out how you get from 5000 to 1 in 400!

    Best

    Andy
    Last edited by nunhead_man; 16th November 2018 at 14:36.
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  5. #5
    Forum Member nunhead_man's Avatar
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    Hi Terry

    Quote Originally Posted by Terry View Post
    50000 people diagnosed are 1 : 400, so times them together it Makes two million people.
    Your logic does not give me a headache.

    But the step I do not understand is this one;

    "But Mnd people live on average 3 years and normal life expectancy is around 75. So during a normal life span 75 divided by 3 mnd people gives you 25"

    25 what? Years?


    Best

    Andy
    Last edited by nunhead_man; 16th November 2018 at 14:41.
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  6. #6
    Forum Member Terry's Avatar
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    Hi Andy;

    I was afraid you were going to ask questions, more aspirins.

    5000 was just a typo. easy bit over. LOL

    I think that I am right, as always but to explain it is not easy.

    If a person lives to be 75 and had consecutive friends with Mnd one after the other living 3 years each. He would know of 25 people that live with Mnd during his life time.

    But at any one year of his life he would only know of 1 mnd person.

    That is why I'm multiplying it by 25, 25 is just a factor.

    I'm sure that I can explain it better Andy but life is to short and I've run out of aspirin.

    Sorry, Love Terry
    Last edited by Terry; 16th November 2018 at 15:00.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  7. #7
    Forum Member Ellie's Avatar
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    Andy, we've had a National ALS Register in Ireland since 1994, collating all types of data and my Neurologist, Prof Orla Hardiman, a worldwide expert on ALS, has written extensively about this subject.

    The Lifetime Risk used to be c. 1/400 but has been steadily increasing over the years due to an ageing population and better diagnostics and disease awareness, and now is much closer. to 1/300.

    The Prevalence of ALS is c. 8/100,000 - that's where the UK figure of c. 5000 comes from. Prevalence refers to the number of people alive at any one time with an ALS diagnosis. It is low due to the high fatality rates. This figure is set to increase, again due to an ageing population, but it has been creeping up due to more people opting for interventions such as NIV and feeding tubes, as well as being cared for in a multidisciplinary setting.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #8
    Forum Member Kayleigh's Avatar
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    Number crunching is not really my thing (I am more of a words person - which you may have gathered already from the length of my posts!).
    Anyway, I do not have much confidence in the statistics that are published. I have read on the MNDA website that the figures are approximate because there is no single resource that collates the actual total number of people with MND in England, Wales, Scotland and Northern Ireland. There is the MND Register but that is for people with MND to register on voluntarily. I take it from what the MNDA are saying, the NHS does not have one overall figure for the number of MND patients in its different NHS regions - I may be wrong? As far as I am concerned, I do not think that MND is as 'rare' as it is supposed to be and this underestimation results in a tragic lack of funding into research into MND and lack of funded resources for MND patients (such as lack of funding for house adaptations, highlighted again on this forum today.)

    Anyway, now back to the 'complications' of BREXIT on the TV.
    Kayleigh x
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  9. #9
    Forum Member nunhead_man's Avatar
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    Good afternoon Ellie

    Aha! Prevalence versus lifetime risk.

    Got it!

    Best,

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  10. #10
    Forum Member nunhead_man's Avatar
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    Good afternoon Kayleigh

    Quote Originally Posted by Kayleigh View Post
    the NHS does not have one overall figure for the number of MND patients in its different NHS regions
    Interesting - surely the Association could work their way around the various centres - for example in South London I think we only have two - I guess that covers about 2 1/2 million people - one being Kings in Denmark Hill.

    So I wonder if we could do a south London estimate?

    This might quite interesting if this was different to other areas as it could point to geographical differences of some sort.

    I'll think on.

    Best

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

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