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Researchers suspect far more cases

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Lisa Salberg Find out more about Lisa Salberg
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  • Researchers suspect far more cases

    HEADLINE: Researchers suspect far more cases

    SOURCE: Yorkshire Post

    BODY:


    LATEST studies by the British Heart Foundation suggest the number of people
    who collapse and die without explanation could be much greater than recorded in
    official statistics.





    Researchers who surveyed coroners across the country estimated that there are
    about 3,500 sudden deaths in apparently healthy adults aged 16 to 64 each year.

    Most are due to previously un-detected electrical problems in the heart but
    in about four per cent of cases no reason could be found despite a full
    post-mortem examination. There remains no nationally recognised category which
    can be used for such deaths and the charity says this creates uncertainty about
    the true number of victims and brings further distress to families.

    It has called for them to be formally classified as the adult equivalent of
    cot death, which is recorded as sudden infant death syndrome.

    The Foundation says that once this got an official label it was possible to
    collate data, identify common causes and take steps to reduce deaths.

    Support groups for victims' families have called for youngsters to be given
    routine heart checks as they grow up as in some European countries.

    Doctors believe further work examining the surviving relatives of victims
    could provide clues to causes of the syndrome. Relatives of victims who have
    died suddenly under the age of 35 are entitled to a free heart test on the NHS.
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Researchers suspect far more cases

    Lisa hi , Boy to any of us this news flash is not surprising huh? I think we can and do see the undereporting and lack of connection to HCM daily. It is evident in simple conversations we have personally how uninformed the general public is as well as many in the medical community . Everytime some asks me about "my condition," Ican tell as to how they word there inquiry or the look on there face , that HCM Education 101 is indicated once again. The kicker is that most of my friends or the ones who inquire have very strong medical backgrounds and have already taken my "101" course before. It seems true to a certain extent that life is so fast paced and people are so distracted that there is not a lot of time or energy left to become informed . So I quess for now it will remain your job and those you mentor to, to go out and spread the word. Another example; two of my cousins that died , on there death certificates it said :cardiomyopathy. One was 30 the other was 42, neither had had a heart attack or any cardiac history. So there is two that I know aren't included in the statistics. Underreporting ... yes . There's my vote. Take Care , Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

    Comment


    • #3
      Re: Researchers suspect far more cases

      Your family is a classic case of under reporting.
      How many people do you know/heard about that "had a heart attach and died very young"...SO the big question is how many are really heart attach and how many are cardiac arrests...of the cardiac arrests how many are HCM related??????????????
      MANY MORE than you think!
      Keep holding class...HCM 101 will eventually stick!

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #4
        Re: Researchers suspect far more cases

        It is amazing how much/less medical community is informed on this matter.
        I have asked my sister to get and echo along with her two kids one 9 and other 5.
        The PCP told my sister that HCM is typically in males and she does need an echo. My sister had to beg for a referral to go to cardiologist for an echo. The PCP still didn't give a referral for the kids since according to PCP, HCM will not show up until they are then in their teens.
        Ketan Thanki

        Comment


        • #5
          Re: Researchers suspect far more cases

          Your sister can send a packet about HCM to the PCP so that he is more informed if she wants to. Please ask Lisa for details about how to do that.

          Reenie
          Reenie

          ****************
          Husband has HCM.
          3 kids - ages 23, 21, & 19. All presently clear of HCM.

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