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Thread: Father diagnosed and genetics

  1. #11
    Forum Member Ellie's Avatar
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    A maximum of 10% of people with ALS/MND have Familial ALS, i.e. the inherited form, and of their first degree relatives, not all will develop ALS.

    It's obviously not unusual to have regional clusters of Familial ALS, if the families have not dispersed widely.

    If your Dad agrees, perhaps you can join him at his next appointment and you can talk to his Neuro or Nurse, or maybe ring the MND Connect Helpline?

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

  2. #12
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    Thank you Ellie, I may just do that.

    As you can probably tell, I am scared at the minute for primarily how my dad will progress and whether there is now a faulty gene within the family.

  3. #13
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    Without being too intrusive, please can I ask if any of your children went through the same thoughts and emotions as I have mentioned and am going through? and how they have managed to cope?

    lots of positivity & love

  4. #14
    Forum Member Twinkle's Avatar
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    Our kids are aged 28, 27, and 22. They have all thought the same as you since their dad's diagnosis and looked up some information online and asked me some questions and that's where it ended.

    Fretting about what might happen or not happen is no good for you as I told our kids.

  5. #15
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    Yes good advice, what will be will be I guess, putting it into practice is harder, although I know that I have to stop the worry and be strong for my parents

  6. #16
    Forum Member Twinkle's Avatar
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    How old are you Tecwyn?

    Yes, be strong as your parents will need you to be. My youngest daughter who lives at home is a massive help for me physically and emotionally
    Her dad loves seeing her so strong, supportive, and confident.
    We don't get upset in front of my hubby, he has a lot to deal with without two crying females on the list lol

  7. #17
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    Ha, yes I can imagine! I'm 31 and don't live with parents but really aim to be a big support to them. Do you worry at all about your children if they ever have any sort of minor illness that could be mistaken for MND? I know that my mum is going to be like that, I suppose things like that get easier to put at the back of your mind as time goes on and dads care needs increase.

  8. #18
    Forum Member Twinkle's Avatar
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    Hi Tecwyn, No, I wouldn't worry, I'd be concerned and tell them to book a Dr's appointment. I'm not a big worrier. I don't dwell on problems either. What is the point in that? It's wasted time and energy.

  9. #19
    Forum Member Lynne K's Avatar
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    I hope that you don't mind me chipping in Tecwyn. Worry is normal for a short time. But best to sort it out quickly because it wastes time if anybody dwells upon some unknowable negative thing. Even if you had a 50% chance of getting MND (which I doubt very much) why waste energy and ruin years of future happy times by keeping it at the front of your mind. I think that you are like me and a lot of others in that you like facts, assurity. But gaining some composure and peace while dealing with this horrid disease requires a bit of letting go of what may or may not happen in the future. As you said to Ellie earlier 'what will be, will be.' Very philosophical and true. Ask your questions of your dad's neurologist soon if you can. Get genetic testing if it will help. But whatever you do, live a full and happy life. Don't let MND take that from you. Lynne x
    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.

  10. #20
    Forum Member Onein400's Avatar
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    Ok.

    Just to answer the original question, but also to give a bit of evolving clarity.

    The term familial is slowing becoming redundant. Early on in research the only way to study MND genetics was using linkage techniques. Without explaining this in detail, it meant that we only found the genes in families which could show some history.

    Now techniques have exploded and we can analyse genetics in much finer granularity.

    Also just because there are no cases in a family (largely due to recall), that doesnít mean a case is NOT genetic related. Families are quite small these days. It is also important to know that even if you have one of the currently identified gene mutations, it is not 50/50 thar you will get MND. MND is NOT a simple dominant/recessive gene inheritance disease.

    But above all, and this is most important, studies on identical twins enable us to estimate how much MND is genetically related. We state 10% but that is only because we havenít found the associations yet.

    The twin studies point us at about 65% being genetic!! But these could be unique mutations in many genes.

    The message to take away from this is that genetics is simply NOT ďThere is no disease in my family so I wonít be affectedĒ. This is vital for public awareness and to get more attention for fundraising. A large percentage of the public donít care because they might see it is as genetic but this is due to a basic understanding of genetics. I donít expect the public to understand detailed genetics, so I am torn as whether to speak a lot about genetics in awarness.

    Finally, MND is NOT rare. It will hit 1 in 300 of all of us. Thatís 200,000 of the currently U.K. population will get it in their lifetimes!!
    Last edited by Onein400; 15th October 2018 at 13:20.

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