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    Australian breakthrough?

    I saw this on MND warriors this week – does anybody have any more information about this?

    https://7news.com.au/sunrise/on-the-...UyZQXBVEvVDoMw
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    I saw the same thing but this is all I know.

    Comment


      #3
      Excellent news makes 2020 a better year

      Comment


        #4
        https://www.youtube.com/watch?v=rbyn...el=10NewsFirst

        Comment


          #5
          nunhead_man Andy, like all announcements of a 'breakthough', it's in a petri dish, but very intersting nonetheless
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            According to the article, Australians only have a 1 in 10000 chance of being diagnosed with MND in their lifetime, whereas here it's 1 in 300. I think I'll move to Australia.
            Each day is made easier with a bit of humour.

            Comment


              #7
              GaryM That's someone not knowing the (significant) difference between prevalence and lifetime risk 🙄
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by Ellie View Post
                GaryM That's someone not knowing the (significant) difference between prevalence and lifetime risk 🙄

                Quite correct. The lifetime risk globally is between 1/300 and 1/400.

                The incidence is 2 to 7 in 100,000 globally and prevalence 7 to 10 in 100000, BUT no one should ever be using incidence or even prevalence statistics for awareness. They just shout rare which MND is not. No other disease uses incidence statistics.

                1/300 is horrendous when you consider what it means:

                200,000 of the current living population in the UK will die of MND! Some are only babies currently, but as sure as eggs are eggs they will develop unless we can find treatments.

                650,000 of USA population!

                and

                about 83,000 of current Australian population!

                Another way to get to the 1/300 figure (Ie validate it) is look at death certificates. In the UK - 1 in 250 death certs per year have MND on!!

                Comment


                  #9
                  And we die alone 😞
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    We all do that.

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                      #11
                      Onein300

                      Thanks for that, the whole rare thing was/is pissing me off. Also the number of people who are told it is 99% chance it is MND BUT we the professionals will wait and see. Leaving people and their families in limbo. Husband was "lucky" that the consultant was quick and firm about his diagnosis.

                      I posted somewhere else that Michael J Fox's new book, is in the papers. They stated that the chances of getting Parkinson's is 1 in 500 and currently 120,000 people are living with it in the UK.

                      So does that mean that MND is more prevalent but the amount if people with it is a rolling 5,000 because many are diagnosed so late and sadly some pass away quickly.

                      Just trying to clarify information for when I am explaining things to interested people.

                      Cheers

                      Donna

                      Comment


                        #12
                        Yes DeeH Prevalence of a disease refers to the proportion of people with a condition at a particular time: prevalance of MND in the UK is ~8.5 per 100,000 persons. And yes, you're right, the number hovers around the 5,000 because it's almost a 'one in, one out' scenario...

                        MND is not very prevalent because of its short life expectancy, irrespective of how long diagnosis takes. I would have some issue about the percentage of MND people having a long and difficult diagnostic pathway - certainly for the vast majority of classic bulbar and spinal onset ALS cases, diagnosis is relatively straightforward, or as straightforward as it can be to diagnose a condition (syndrome) for which there are no biomarkers and is given after ruling out other mimic possibilities.

                        If you have atypical presentation, PLS, PMA, flail arm, isolated and/or slow progression, the diagnostic criteria for ALS is not met, hence the wait and see approach. And, human nature being what it is, these are the cases we hear about, rather than the boring run-of-the-mill cases. Of course the Neurologist's competencies play a part too.

                        Take care.
                        Love Ellie.

                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Originally posted by Ellie View Post
                          Yes DeeH

                          MND is not very prevalent because of its short life expectancy, irrespective of how long diagnosis takes. I would have some issue about the percentage of MND people having a long and difficult diagnostic pathway - certainly for the vast majority of classic bulbar and spinal onset ALS cases, diagnosis is relatively straightforward, or as straightforward as it can be to diagnose a condition

                          Take care.
                          Love Ellie.
                          Hi
                          just to chuck into the mix, many of us may have had symptoms long before diagnosis, for me it took nearly 3 years to raise problems with GP, so it could be its more prevalent than we think, us slow burners could be skewing the numbers.
                          Diagnosed within 5 months ( only 4 appointments ) a month between each department, bish bash bosh, done deal

                          whats the saying , lies, damn lies and statistics
                          s
                          As long as there’s golf and beer I’m happy

                          Comment


                            #14
                            I am sure Stephen was experiencing symptoms long before diagnosis. How many of us put off going to the doctor because of embarrassment. Then we end up with a list of symptoms which cause more embarrassment. Then we have 10 minutes with GP before we even get started. I had to drag Stephen to GP then the hospital. A lot of us are typically British and don't want to make a fuss. Then we have problems being heard. 🤔

                            Comment


                              #15
                              About 3 years before I went to my GP. I always tried to manage any health issues myself before going to the doctors. But I was getting worried that it could be serious for over a year. I let my dismissive other half influence me for a long time but it was plainly something to check out so eventually I went to my GP.. My first neurologist discharged me after ordering a spinal MRI, then another year before a definite diagnosis. So 4 years pre-diagnosis. Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                              I'm staying positive and taking each day as it comes.

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