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Why is there not a mody thread anywhere [emoji24]

Discussion in 'Ask A Question' started by Fawbs89, Oct 27, 2020.

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  1. Fawbs89

    Fawbs89 · Active Member

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    Why is there not a mody thread anywhere
     
  2. Antje77

    Antje77 LADA · Moderator
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  3. EllieM

    EllieM Type 1 · Moderator
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    https://www.orpha.net//consor/cgi-b...=MODY&title=MODY&search=Disease_Search_Simple

    Unfortunately (or fortunately depending on how you look at it) MODY is rare, about 1 in 10,000 for adults and 1 in 23,000 for kids. But 89% of cases get misdiagnosed as T1 or T2....

    Usually on these boards we start asking if people have been tested for MODY when they exhibit strange T1 or T2 symptoms.

    Maybe there should be a MODY forum though, if only to have a description of the condition for MODY folk to look at when first diagnosed. I'd certainly advocate for it.

    What do you think, MODs???
     
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  4. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Ellie - We have something like 40+ sub-fora and analytics and feedback suggests people find navigating all those different option difficult, leaving them bewildered, and also an overwhelming number simply never embrace the Search facilities.

    In most cases, the management of MODY is fairly closely aligned to T1, and those living with MODY find themselves getting much from those sub-fora and threads.
     
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  5. Fawbs89

    Fawbs89 · Active Member

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    I really wish there was. Whilst I agree with the guy below as I was misdiagnosed as a type 1 for years it's frustrating that's there's not much on here that I can find. The threads post ect I have found are old.

    And FYI the treatment is not the same as type 1 it bugs me when people lump it together.
     
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  6. Fawbs89

    Fawbs89 · Active Member

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    Yeh simalar but not the same. I'd prefer a section for it so I could meet other mody people.
     
  7. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Fawbs, there are actually very modest numbers of members, registered as living with MODY. Single figures in the last year, so it could well end up being a very lonely place.

    You could always start a thread, for MODY members to interact on, which could, perhaps, be pinned in the T1 area, so it would always be about routine threads.

    If it then gets going it could help demonstrate the need for such a sub-forum.
     
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  8. Fawbs89

    Fawbs89 · Active Member

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    When you say registered do you mean on this website? As I'd be inclined to disagree with you in respect of numbers. Whilst mody is rare there are 4 people just in my family that have it. Do you have mody as you seem to be very knowledgeable about a condition that affects so few... In your own words.
     
  9. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Yes, on this website.

    If you know lots of other folks with it, maybe you could encourage them to join and participate on the forum. :)
     
  10. Fawbs89

    Fawbs89 · Active Member

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    Clearly I don't know lots of others hence me trying to join a forum to meet others.... My point was in respect of your comments about being registered. Clearly this website doesn't think mody is important enough to be included.. So I'll have to look elsewhere.
     
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  11. Goonergal

    Goonergal Type 2 · Moderator
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