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should every family member be screened?


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  • should every family member be screened?

    Hi, I was dx with HCM in my mid 20's. My father had sudden death at age 60 from HCM, my cousin died at age 29, no HCM diagnosed, but probable.

    I have a brother, age 43, and sister age 39, both screened and both negative for HCM. My brother has 2 children, age 10 and 6. Should they be screened? I'm beginning to think so. It's naive to think that since my brother doesn't have it, doesn't mean they won't, correct?

    My children, are being screened. My daughter age 4, has had 2 echos (ages 2 and 3) not to go back until age 5 and my son, age 2 is getting his baseline next month.

    How far reaching does it go? My cousins (also cousins of the one who died) have siblings and children, yet their fathers don't not have HCM, yet they are brothers of my father..... Confused yet?

    Essentially, how far should one go in the bloodline for screenings?

    Thanks, Laura
    Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

  • #2
    For your own family your brother and sister should be tested every 5 years. Their kids should be tested every year after about age 10-11 until they're in their 20's then every 3-5 years after that, just like your kids. The reason is that rarely HCM can "hide" in a person and they won't show thickening but will still carry the gene that can be passed on. I suspect this has happened in my own husband's case. His grandmother's echo suggests HCM but it wasn't diagnosed until she was 90 years old. His mother had an echo that didn't show anything at the time. However, he has full-blown HCM with a very thick septum. I think his mother's gene didn't fully express itself in her. As far as the cousins, I'm not sure but I know that they do need to be checked if it was their sibling that died. Beyond that there's still the possibility it could've been passed on but I'm not sure how much. I hope this helps.


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


    • #3
      Thanks Reenie. I thought my neices (one is 10 now) and nephews should be checked. I'll pass onto my brother.

      Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.


      • #4
        It goes more then your siblings.
        Your cousins and their children also need to be screened.

        It was only after I was diagnosed with HOCM we found out I have a cousin, on my fathers’ side, that has had HOCM for a few years and never told anyone but his sister.

        Now all the cousins know and can take the appropriate actions.
        Cleveland Myectomy Club
        August 31, 2004


        • #5
          The reality is, unless yours is a very different family than mine, close relatives will not consider your diagnosis threatening to their own health. The concept of shared danger, except in families where there have been multiple cases of SCD, will bounce off them like a super ball thrown against a brick wall.

          I think what is lacking in the advice that is always offered to a question such as this, is how exactly do we notify our relatives and what exactly do we tell them? All 1st degree blood relatives (your parents and all of their descendants) should, at the very least, have information in their own medical records that mentions family history of HCM. Screening will follow when either the now informed individual or that person's DR feels that it might be a good idea.
          • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
          • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
          • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
          • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
          • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
          • 2011: Brigham & Women’s - Medtronic ICD implant


          • #6
            Boz, you're so right. My husband's brother doesn't want to get tested and won't test his children unless they show a problem - although his son aged 22 says he feels his lung capacity isn't what it should be when he's playing basketball. This is so familiar since it's exactly what my husband used to say when he had to run. I attribute some of this denial to the physician who told his wife (who worked for the doc) that once checked and clear, always clear among other bad information. I think they are under the false ideas of ignorance is bliss. I've tried to tell them and all the extended family that they need to be checked but unless I want to sound like a total nutcase every time I talk to them I have to give up. It's their lives, not mine.


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


            • #7
              Lisa has mentioned several times that her own brother won't get screened.

              'nuff said.


              • #8
                Correction. My brother is fine with screenings, it is my cousins that will not get screened.

                We offer a letter on who should be screened and how that is perfect for sharing with extended families. If you need a copy call the office.

                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)