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  • #31
    OK people,
    Maybe I’m all wet on this. (That’s why I love these discussions so much; - I just might get to learn something new.) However, that said, I still don’t see the forest – there’s just too darn many trees in the way.

    Jim, you say if your mother proves not to have the HCM gene’s you have, it will prove that you got it from your father. How come? To me that would still leave open the possibility that you are a ‘spontaneous mutant’, and if a sibling had it too, couldn’t you each have ‘spontaneous mutant’ genes? Possibly your genetic makeup, and those of your siblings, is susceptible to developing this variation – even if your father did not have the actual condition himself.

    Because your dad suffered sudden cardiac death at a young age – and not being able to now make the determination if it was HCM or not, - to my way of thinking this should not preclude your being able to get an AICD. The possible risk should be enough to at least give you that option. It’s not really a treatment after all, it is a safety net.

    If you had something from your father, such as a hairbrush where you could glean some hair on which genetic testing can be done, or some clothing stained with his bodily fluids, or something like that, you could still nail down the possibility of his having the same HCM variant set of genes that you do – but whichever way you got it, just the fact alone that he died a sudden cardiac death should do it for you being able to get your safety net. Don’t forget, this disease has not been identified for all that long a time yet.

    While we are on the subject, I suspect that many of the cases of “spontaneous mutant” are truly the descendants of people who had HCM but displayed no symptoms their entire life – or at least never had the diagnoses. Nature is always trying to improve the species (whatever species that is) by playing gene games – and natural selection then tends to let the more able survive better. This does not always hold true however, as most HCM and other people with genetic disorders live long enough to at least breed - if not live their entire normal life span. I guess it would matter to a caveman who had to keep up with the pack, but this is not true in today’s world.

    If there is some rule that says you can’t get an AICD unless you can prove beyond any doubt that you’re family members that died a sudden cardiac death did so because it was proven that they had HCM – that rule is ridicules and should be abolished. How can you tell if they had HCM if they died before the condition was known to exist and you have no material on which to run a test?

    Sorry people, I still don’t see how it could rationally matter whether you inherited the disease or are a “spontaneous mutant.” You have it either way. (I said ‘rationally matter’ – ridiculous rules not withstanding.) I would absolutely agree however that further study is required to identify all the genes that play a part in this disease, their commutations and permutations, and any combinations with a propensity toward producing offspring that are ‘spontaneous mutants’ from parents that are not HCM sufferers themselves.
    Burt

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    • #32
      I would absolutely agree however that further study is required to identify all the genes that play a part in this disease, their commutations and permutations
      Burt, you answered your own question right here.

      combinations with a propensity toward producing offspring that are ‘spontaneous mutants’ from parents that are not HCM sufferers themselves.
      By definition, spontaneous mutations bring with them no 'propensity'. They are just that, spontaneous.

      Sorry people, I still don’t see how it could rationally matter whether you inherited the disease or are a “spontaneous mutant.” You have it either way. (I said ‘rationally matter’ – ridiculous rules not withstanding.)
      I don't know what you mean by 'ridiculous rules', however, it is the very foundation of your argument I quote above. Further study includes genetic research and understanding how this disease jumps into the genome or how it is passed on. Like it or not, gene therapy is on the horizon and without diving into bio-ethics, some diseases -perhaps HCM- can be better understood if we look into the past to (at a minimum) predict the future. Maybe even know our son or daughter has the gene and take prophylactic measures to preserve life.

      I will bow out of this conversation now and still encourage anyone who has information regarding the connection to rheumatic heart in your family to chime in. I, for one, would like to hear what you have to say on this topic.

      Best,
      Doug
      NEMC's (Boston) First Myectomy 7-22-2003

      Comment


      • #33
        Hi again Doug,
        Let me have just a word and then we can all address the rheumatic heart issue, if anyone wants to chime in. I truly hope they do, as that is the main topic.

        When I used the word propensity – it was in regard to the gene set of a person who did not themselves have HCM, but had a leaning if you will in that direction, so that their children might in fact be born with the HCM deviation.

        I do believe that genes have the ability to change their conformation to some degree from generation to generation, causing children to have a variation from their parents - Ergo spontaneous mutation. I’ve heard arguments on both sides of this issue, and so far at least, that is what I choose to believe.

        Okay – anybody want to comment on the rheumatic heart issue? Anxious to hear.
        Burt

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        • #34
          Hi, my husband has HOCM and is the only person we have been able to find with the disease. Both of his parents are very healthy and his grandparents lived to ripe old ages. Paternal grandmother just died at 92 and grandfather is still alive at 93. Maternal grandmother is 85 and grandfather died of a brain tumor 20 years ago. My husband has many aunts, uncles and cousins and nothing, including rheumatic heart. His paternal grandfather did have a "heart attack" at 43 but is still alive. Interestingly, my husband is Dutch on both sides of the family. I think I was reading in another discussion about this connection to dutch hereitage. Anyway, It would sure be nice to know where it is coming from, if for no other reason but to just know.
          Heather B. My husband is 37 and has HCM. He had a myectomy in May 2002 and is doing OK now. We have 2 children, 11 and 9 and so far they are OK.

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