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Thread: 1 in 400?

  1. #11
    Forum Member Terry's Avatar
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    Hi Kayleigh and Andy;

    As you probably both gather, I am more a numbers person than a written words person, or a spoken words person now.

    It is fun using a talking machine when you are a bit dixlictic????????????

    Glad it sort of makes sense and there's no more questions Andy.

    Love to you both, Terry

  2. #12
    Forum Member Kayleigh's Avatar
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    Hello again Andy,
    I expect that the reason why the actual numbers are not collated is the lack of funding for it to be carried out? An issue with using numbers from the MNDA is that not everyone with MND is registered with them and not everyone goes to one of its centres or regional meetings (if that is what you mean by MNDA centres?).
    Kayleigh

  3. #13
    Forum Member Ellie's Avatar
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    Kayleigh, MND falls into the definition of being a "rare" disease because of its low Incidence rate of 2-3 per 100,000 person-years - again due to high mortality over a low number of years. (This takes me back to my Uni days and those boring Quantitative Analysis lectures )

    There is a disconnect between the lifetime risk and prevalence/incidence because of the high mortality and how data is shown and interpreted.

    Being classified as a rare disease does carry benefits in terms of getting orphan drug status from the EMA, and sometimes extra funding etc.

    Enjoy your politics watch!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
    Forum Member nunhead_man's Avatar
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    Hi Kayleigh

    Guess you are right about funding.

    Quote Originally Posted by Kayleigh View Post
    An issue with using numbers from the MNDA is that not everyone with MND is registered with them and not everyone goes to one of its centres or regional meetings (if that is what you mean by MNDA centres?)
    No what I mean by MNDA centres are those hospitals that specialise in treating those patients on the assumption (heroic) that everybody with MND ends up there.

    For example around here I started out at Lewisham General via my GP but was referred on to Kings as they are the south-east London specialists in neurological disorders including MND

    Best

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  5. #15
    Forum Member Ellie's Avatar
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    Yep, we get all the same TV channels here on Sky or Freesat etc.

    Our shopping centres would be very familiar to you too - Ireland is very similar but very different to England !!

    PS. Aren't you too young for Countdown Kayleigh
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #16
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    I always thought the 1 in 400 was referring to that Scotland has 400 mnd sufferers approximately at any given time

  7. #17
    Forum Member nunhead_man's Avatar
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    Good afternoon Ellie

    Quote Originally Posted by Ellie View Post
    Kayleigh, MND falls into the definition of being a "rare" disease because of its low Incidence rate of 2-3 per 100,000 person-years - again due to high mortality over a low number of years. (This takes me back to my Uni days and those boring Quantitative Analysis lectures )
    In that case if you want to be taken back again to your Quantitative Analysis lectures, and re the 1 in 300 or whatever it is, how does that compare to the other better-known things like breast cancer, heart attack and stroke?

    Best wishes

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  8. #18

  9. #19
    Forum Member Ellie's Avatar
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    Andy, I'd rather watch paint dry


    Thanks Doug! x
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #20
    Forum Member nunhead_man's Avatar
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    Good morning Doug and Ellie

    Thank you - I will have a poke around

    I'm having a debate with a local councillor about the charter hence the question.

    She seems to think it's some kind of competition about which group people by disease group are worst off.

    Quote Originally Posted by Ellie View Post
    Andy, I'd rather watch paint dry
    Strangely we have had the decorators in this week.....

    Best

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

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