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Thread: Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease

  1. #1
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    Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945403/

    Abstract
    Critical questions arise about misunderstandings of genetics. We interviewed for 2 h each, 64 individuals who had or were at risk for Huntington’s disease (HD), breast cancer or Alpha-1 antitrypsin deficiency. These individuals revealed various misunderstandings that can affect coping, and testing, treatment and reproductive decisions. A therapeutic misconception about testing appeared: that testing would be helpful in and of itself. Many believed they could control genetic disorders (even HD), yet these beliefs were often incorrect, and could impede coping, testing, and treatment. Misunderstandings about statistics and genetics often fueled each other, and reflected denial, and desires for hope and control. Emotional needs can thus outweigh understandings of genetics and statistics, and providers’ input. Individuals often maintained non-scientific beliefs, though embarrassed by these. These data have implications for care, and public and professional education. Misunderstandings’ persistence, despite realization of their inaccuracy, suggests that providers need to address not just cognitive facts, but underlying emotional issues.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #2
    Join Date
    May 2008
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    reno,nevada
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    Sharon, this paper is so heavy (for me)....and I do agree with everything except that not all humans have 46 chromosomes. I have a 47XXXY brother.....understanding aneuploidy takes on a new meaning, it’s a difficult subject matter. I try, and I forget now, the material is intense.

    This paper is also very long and needs plenty of thought.....and in any decision or attempt at understanding, what happens is misconception, misinterpretation, and misunderstanding, always has that emotional factor built in which makes things all so difficult......If a doctor or counselor has it wrong, it becomes a train wreck. I hate the word blame, does it always have to be somebody’s fault?

    In my case,(scoliosis) I never ever assigned any blame.....It never mattered, it shouldn’t matter. I guess that’s just me.

    With all the things that happen around here, mainly complications from spine surgery, even if the odds or chances are small, Linda’s wisdom in one of her posts many years ago taught me that it only matters if it happens to you. We see this everyday. We cant dodge that bullet everytime....

    Testing, well, what can I say? It looks like Elizabeth Holmes of Theranos is in hot water these days.....Its a let down, but Zucky wants to cure all disease this century.
    http://www.wired.com/2016/05/everyth...anos-saga-far/

    Its nice to have young people around.....(smiley face)

    Thanks for posting....I will probably re-read this one again

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
    Join Date
    May 2008
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    reno,nevada
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    3,557
    Crystal gets married on Saturday.....Uncle Ed is proud, she finished her residency.....

    I call her Doctor-Doctor now....I get a kick out of it.(smiley face)

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Ed, 1,000 congratulations to Crystal for her hard work and on her upcoming nuptials and to you for supporting the creation of another doctor!
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Thanks Sharon,

    Well, its confirmed, she will practice for another year, then go on to another fellowship in pediatric surgery. She knows damn well about scoliosis from me, saw that it saved my life which affected her decision since I talked so highly of my surgeons, but she wants to save kids lives in an ER setting. The thing is that we don’t know where this will happen, she will apply and know more in August. She eventually wants to return to Reno at some point.

    I am a bit overwhelmed with all the logistics of the wedding....all the ladies are calling me with all sorts of instructions on when and where....Of course, I always reply with I’m ready for Sunday when the wedding is Saturday, and it makes them freak out. (smiley face) Its going to be a Wedding Singer weekend.....(smiley face)

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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