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Caution on community screenings

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Lisa Salberg Find out more about Lisa Salberg
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  • Caution on community screenings

    I would like to issue a bit of caution to you all. Today I was informed of a company that is going around preforming "HCM screenings" for a fee (under $100.00) First of all this "Company" is a nurse and a technician. They have no cardiologist involved in the screening process. I have seen their "family history / patient information sheet" it is poor at best. The letters they send out explaining HCM are outright wrong and misleading. I also found out that they are using the name of the HCMA in their sales pitch to school nurses.

    There are GOOD screening programs in the USA - this is not one of them. I have been in touch with officials in the state where this is happening and hope they get involved to stop these misleading and dangerous 'screenings'. I am withholding the name of this company at this time at the request of state officials.

    Getting accurate information out on HCM is what is important to the HCMA - when someone places false information into the public that sets back our work and causes confusion. As an example some of the liturature they have states "HCM is a congential disease and is sometimes caused by a virus"..."Unlike other screenings your child only needs to be screened once while in high school".... there are other statements that are similar. To those of us that understand HCM we know how harmful statements like this can be.

    Good night,
    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)

  • #2
    Re: Caution on community screenings

    Yes sir-ee bob,
    You can avoid getting HCM with a few simple rules
    1. – Don’t walk under a ladder (especially a low one.)
    2. – Don’t break a mirror (especially a glass one.)
    3. – Don’t let a black cat cross your path (especially a four legged one.)
    4. – Don’t step on a crack (or you’ll break your mother’s back.)

    If you have it already, you can get rid of it by going to your local witch and have her cook up a potent with this formula –

    Witches, witches, woo, woo, woo
    Cook me up a potent brew
    With eye of newt, knee of frog,
    Whip me up a special grog.

    A dash of bat,
    A screech of cat,
    A twist of lime,
    So all will rhyme.

    In a vat that boils and bubbles.
    Cast a spell to end my troubles.
    Round and round go stir the pot
    And rearrange my troubled lot.

    I understand this lovely mix will also cure warts, re-grow hair, and enrich your love life.

    Just be sure you have a genuine witch by having her fly around a bit on her broom. (There are so many charlatans trying to cash in on the witch business - you don’t know who you can trust anymore.)
    Burt

    Comment


    • #3
      Re: Caution on community screenings

      Burton,

      Are you sure your taking all your medicine....
      " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

      Comment


      • #4
        Re: Caution on community screenings

        Tigger, maybe Burton is taking too much medication
        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


        • #5
          Re: Caution on community screenings

          That is what i was going to say Pam you beat me to it :P :P :P

          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment


          • #6
            Re: Caution on community screenings

            Lisa:
            Is there anyway you can send letters telling school nurses, etc. of the incorrect information this company has been sending?

            I know you will not let a stone unturned until you get some action. I respect you for this
            Esther

            Comment


            • #7
              Re: Caution on community screenings

              Esther,
              I think the term you are looking for is that Lisa leaves no Tern un-stoned. (I still remember the last time I was stoned. I think it will be good for the nurses.)

              Pam and Shirley and Tigger1 – - - Take all my medication – take all my medication? How can I do that when they have me in this jacket whose sleeves are so long they have to cross them in front and tie them in back? I guess I’ll just have to get by with what they shoot into my arms,
              Burt

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