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Thread: Father diagnosed and genetics

  1. #1
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    Father diagnosed and genetics

    Hello to everyone here, pleased to meet you.

    Unfortunately my father has recently been diagnosed and it's a big shock. I have a few questions if possible please and please excuse my ignorance and I sincerely don't mean to offend.

    Does everyone with MND enter the "locked in" phase and if so how long can a person expect to live like this?

    Can a sporadic case still be genetic as the faulty gene has to start somewhere so could it in effect start with my father then be passed on? With it being so rare I find it difficult to believe that all cases are not genetically linked somewhere. I wonder if there are many cases of a parent being diagnosed with sporadic then a son/daughter getting it?

    Still in shock and things spinning round my head,

    Best wishes to everyone here.

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Tecwyn. Sorry about your father's diagnosis. There was conversation recently on here about genetics so if you put a search on posts you ought to find something to read. The other question I pass on. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Barry52's Avatar
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    Hello and welcome Tecwyn.

    I’m sorry to hear about your father and I understand how you and your family must feel. Don’t rely on what you might read on google and the best source of information can be found on MNDA website although it can be difficult to navigate.

    Unless your family has a history of MND then the likelihood of you getting it is so remote. Only around 10% of cases are familial.

    You will find many answers to questions you may have from our forum family. Stay positive and encourage your dad to seek support from his health professionals.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  4. #4
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    Thank you for replies, I will be using this forum as a source of support to help my dad. I maybe need to put this genetic link at the back of my mind so as to be strong for my parents I think.

  5. #5
    Forum Member Ellie's Avatar
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    Hi Tecwyn and welcome to the Forum.

    Sorry about your father's diagnosis.

    No, not everyone gets locked in - the vast majority of us don't.

    There is a very slim chance of a de novo genetic fault, but as 90-95% of all MND cases are sporadic and, if there's no familial history of MND, the overwhelming odds are that your dad is the unlucky 1 out of 300 people to get an MND.

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

  6. #6
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    Thank you Ellie, it's all raw at the minute and wrestling with thoughts on how my dad is going to deal with it and how to move on with a slight chance I may get it, hopefully things will ease and we can live as calmly as possible

  7. #7
    Forum Member Terry's Avatar
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    Hi Tecwyn and welcome to the forum;

    It can take a couple of months to get your heads around a diagnoses such as Mnd.

    I echo what Ellie says in answering your questions.

    Best wishes, Terry
    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.

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    Thank you Terry, yes a lot to come to terms with unfortunately

    all the best

  9. #9
    Forum Member Tim-griffiths's Avatar
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    Hi Tecwyn.

    Welcome to the forum, here you will find help and support and hopefully answers to your questions. MND diagnosis is difficult to get your head around for everyone involved, the sufferer, family and friends, and, as in my experience, most people don't actually know what motor neurones disease is and how it affects those involved,
    All our best wishes
    Tim and Mary

  10. #10
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    Thank you for the kind words, still finding it hard to believe that this isn't a genetic disease, if it wasn't I think there would be more clusters around certain occupations/locations?

    If 5000 people have a MND in the UK then given a 50/50 chance offspring will get it due to a gene mutation that leaves 2500 people of which say half won't live long enough to get a diagnosis or a mis-diagnosed. The remaining 1250 people who went on to get diagnosed would then be classed as famillial whereas in reality all cases were familial just never classed as such due to parents never being diagnosed but carrying a gene. Sorry for wittering, not sure I'm making sense! what I'm trying to say is that without the clusters there must be a dormant gene within many unlucky families

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