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How do you deal with misinformation?

Discussion in 'Type 1 Diabetes' started by bbyyisa, Jul 1, 2019.

  1. Tipetoo

    Tipetoo Type 2 · Expert

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    I missed our local BCA: Bundaberg Cricket Association. :D
     
  2. Listlad

    Listlad Prediabetes · Well-Known Member

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    British Car Auctions
     
  3. Listlad

    Listlad Prediabetes · Well-Known Member

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    Interesting story.
     
  4. Bic

    Bic Type 1 · Well-Known Member

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    Beta-Cell Apoptosis, meaning: disapperanace (literally: the 'falling down of') beta cells (insulin-and-amylin-producing cells). I call it a honest name because it simply describes the problem, with no attempted explanation attached to it.

    However, my main point was: we lack the part of the body which gets impaired by T2. I found out this usually does the trick, provided I use a wholly unfamiliar name for the condition. If I use the name 'diabetes', I see there's no hope, especially in my home country (I live in Italy) where it's still extremely uncommon to distinguish diabetes types (just imagine!).

    Thank you for asking and sorry for my poor English (I guess I'm not very bright on a Sunday morning ;))

    A big hug!
     
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  5. Listlad

    Listlad Prediabetes · Well-Known Member

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    I met a man the other week who was diagnosed with T1 at the age of 40.
     
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  6. Mr_Pot

    Mr_Pot Type 2 · Well-Known Member

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    Although using the acronym BCA would cause confusion, I agree that if Type 1 had a completely different name it would help the public to understand. I think this has been discussed before but can't see it happening unfortunately. I like your point that in Type 1, diabetes is a symptom rather than a disease, I hadn't thought of that before.
     
  7. Marie 2

    Marie 2 LADA · Well-Known Member

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    The powers that be have bandied about a different name for type 1. It would be nice. I have heard the rumors of auto immune wanting to be used. If you could say auto immune beta cell disease, it would sure help to differentiate it. As long as "diabetes" is still in a title for it, it's going to get muddled in with everything type 2, dropping that from the description would go a long way to help medical personal pay more attention too this disease as being different and get rid of the old ideas and biases.
     
  8. Dark Horse

    Dark Horse · Well-Known Member

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    Not 'some' - the majority of people call it type 1 diabetes (mellitus). I don't know of anyone who calls it BCA, whether in the medical profession or not.

    Wouldn't it be better to say something like, 'I think what you're saying might apply to someone with type TWO diabetes but I have type ONE diabetes which is a completely different medical condition'? That way, you are helping to educate the people who are unaware of the difference and thereby reducing the chances of 'misinformation' being given to someone else. If you want to use an analogy you could say it's like the difference between chicken soup and tomato soup - both are called 'soup' but you wouldn't find chicken soup on the menu in a vegetarian restaurant.
     
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  9. Scott-C

    Scott-C Type 1 · Well-Known Member

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    There's a few posters who are already succesfully using open source apps like openAPS, Loop and AndroidAPS to automate their insulin delivery.

    One of the main pioneers, Dana Lewis, has written about it recently:

    https://www.amazon.co.uk/Automated-...very&qid=1558193930&s=gateway&sr=8-1-fkmrnull

    They have done it so succesfully on a totally open source unregulated basis that some of their code can be found in commercial systems and they now talk regularly with pump developers and doctors who are trying to play catch up on what the open source community has done.

    I was at a seminar about looping recently where Dr Emma Wilmot, head of the Association of British Clinical Diabetologists and one of her patients Alasdair McLay said that Al was giving tutorials to hcps about how looping worked.

    https://mobile.twitter.com/alternateal

    It reminds me of that Elliot Joslin quote from the 1940s where he said that he found diabetics to be the most resourceful people he had ever met!
     
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  10. Bic

    Bic Type 1 · Well-Known Member

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    Dear Dark Horse,

    Your 'soup' example is very nice and lively. Only, soups are a matter of taste. And medical conditions are a matter of health, well-being, and, sometimes, a matter of life and death.

    Let's think being called (and thought of) as a man when you're actually a woman, or the other way round. In most cases hat should not be a problem, right? Men and women are both 'human beings' after all. Equal rights and so on. So, fine, let's drop the distinction and call ourselves just human beings. Nothing sounds better to me… But what happens when you have to fight on a ring or to compete in some sport, or when you need medical care for a prostate cancer or some other sex-related matter? Then, a clear distinction is certainly needed, and it does make sense.

    Plus, there's the need for recognition. It stings, when someone mistakes you for someone of another gender. Even if their mistake does not imply judgement, danger or a different legal status, I guess we all would rather be identified with the gender we (chose to) belong to.

    My suggestion came, as I explained, from a habit I developed because I live in Italy. Our language does not put adjectives first, but nouns first: we say 'diabete di tipo 1' (see how long it is? see how 'diabetes' comes first and the number only in the end?). So, were I to say something like that, the only thing a person would register would be 'diabetes'. The 'type 1' part is perceived as some unnecessary frill which means absolutely nothing – and I mean nothing with all my might – to whoever I meet. AND I ended up in a coma (hypo) more than once, because some idiot took the wrong measures or did not know what to do when I needed help. So, yes, I suppose I developed some knife-in-teeth attitude about this thing, but to this day it has proved useful to keep me safe and sound., and I'm partial to it. But I don't want to sound over-aggressive or unreasonable to fellow forum users… I am a pleasant and peace-loving elderly lady, under many other respects, I didn't mean to sound lofty or overcomplicated.
     
  11. helensaramay

    helensaramay Type 1 · Expert

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    That is no surprise to those of us who know that more than half the people with type 1 diabetes are diagnosed over the age of 20.
    The ignorance of it being a childhood disease (including calling it juvenile diabetes by a well known international type 1 charity) often leads to dangerous misdiagnosis of type 2.
    I was diagnosed in my mid 30s and know there are people on this forum diagnosed significantly older than the guy you have just met.
     
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  12. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I was 31, 7st 1 and surprise, surprise not feeling too good at the time of hospital diagnosis, this is what the surgery DSN said to me ' It's children and young adolescents who get diagnosed with type 1' it beggars belief :wideyed::rolleyes:
     
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  13. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    A very good quote indeed :)
     
  14. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    I think the biggest problem is type 1 is just a very small % of the diabetes population, type 2 is often in the news/media and at epidemic proportions, especially now with children being diagnosed with type 2 !

    I say I have type 1 diabetes, it's a medical condition, as my body attacked it's self and my pancreas was attacked with two falls and a submission :(:( A defunct pancreas
     
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  15. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Here's the full quote - it made me laugh!

    "I must say that I do admire the backbone and the brains of the average diabetic and I truly believe on the whole they are superior to the common run of people and therefore their good qualities merit cultivation. Second, I think they are less apt to drink, far less likely to have syphilis or gonorrhea, and distinctly less likely to have, what is anathema to me, 'nervous prostration and nerves.'"
     
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  16. Dark Horse

    Dark Horse · Well-Known Member

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    Interesting. I always thought that Italians would automatically pay more attention to the modifier because, as you say, the adjective usually comes last in Italian.

    I still think that it's better to explain to people what the differences are between the types of diabetes - it would be a good way of educating those around you so that they do know what to do if you do hypo.
     
  17. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Omg, that nearly made me spit out my tea, but many, many thanks for sharing :):hilarious:
     
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    #57 Robinredbreast, Jul 7, 2019 at 2:40 PM
    Last edited: Jul 7, 2019
  18. JAT1

    JAT1 Type 1 · Well-Known Member

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    I was also originally diagnosed as Type 2, because of my age, and prescribed lots of meds. The condition of my liver so alarmed my GP that he sent me to a liver specialist. The GP wouldn't tell me about any of my test results, only that my liver was in the worst shape he's seen anyone's. The liver specialist told me that the reason for my liver problems was due to the meds I was on and to stop them immediately.
     
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  19. EllieM

    EllieM Type 1 · Well-Known Member

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    Unfortunately T1s can become insulin resistant like T2s, leading to a condition known as double diabetes.....

    But I agree that life as a T1 would be much easier if people didn't confuse T1 and T2. Interestingly, I would argue that this has only been an issue in the last couple of decades with the great increase in T2. When I was first diagnosed (1970s) there might have been ignorance about the illness, but there was equal ignorance about T2, so I didn't have any problem with people applying T2 rules to me as a T1.
     
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  20. Peter03

    Peter03 Type 1 · Active Member

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    I became type 1 at 16years old I went to see my doctor after loosing a lot of weight and being very thirsty, I told him all this and he said there is nothing wrong with you we cannot all have muscles and be strong I then got a sample of wee in a jar out that my mother told me to take he got very angry and said is your mother the doctor now he did do the test, I was in the hospital 2hours later, That was 50 years ago, look after yourself and be willing to disagree with doctors, nurses or anybody who you think is wrong, I have had disagreements with the medical professionals in the UK and hear in france
     
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