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HCM Across Generations

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  • HCM Across Generations

    I have a question for othe forum members.

    In our family, the worst effects of HCM seem to occur faster in each generation.

    My father-in-law wasn't diagnosed with the disease until he was nearly 80, at which time it became severe. We know now that the disease originates in his family. He was a pilot in the Air Force. Since the physicals given in the military to air crew are fairly rigorous, we believe that, while he had the disease, it must not have been bad enough to be noticed in his twice yearly flight physicals.

    His children all inheirited the disease, and all encountered major problems (dilated cardiomyopathy and congestive heart failure) in their forties.

    His grandchildren are not entering their twenties, and most entering congestive heart failure.

    Has anyone else on his forum had a similar experience. Are there other families where the disease progresses quicker in succeeding generations?

    Thanks.

  • #2
    Re: HCM Across Generations

    I don't know any statisitics on this. Where are your family members getting health care? If they're getting care at a specialty center I would think that you may have better luck at keeping the serious symptoms at bay for a while. For what it's worth, my husband was in the Air Force also and although he didn't fly, had routine physicals. He was diagnosed at age 35 while still in service because of a heart murmur that hadn't been noticed before.

    Reenie
    Reenie

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

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    • #3
      Re: HCM Across Generations

      They have been seen by HCM specialty centers, most recently the Cleveland Clinic.

      As a family, we have been dealing with this now for about 35 years (since the early 1970s). In that time, we haven't seen any treatment that has had a significant effect in slowing the disease. Some of the drugs (i.e., beta and calcium channel blockers) can mask the symptoms of HCM, but I'm not aware of anyhing that actually slows the disease.

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      • #4
        Re: HCM Across Generations

        There are some studies that have been done correlating the progression but, many have mixed data and not specifically about that topic. Here is one about ES( end stage ) and it does referrence the familial aspect.

        http://circ.ahajournals.org/cgi/content/full/114/3/216

        "Clinical and demographic markers that reliably anticipate evolution to the ES could not be defined with precision, largely owing to the retrospective nature of the study design and the broad clinical profile of ES patients. Nevertheless, certain clinical profiles were associated with a greater likelihood of developing ES. Of particular note, we found 20% of probands in the present study had at least 1 relative with the ES, which suggests that affected relatives merit close follow-up for early detection of ES."

        Pam

        PS In my family it appears that my generation has had a similar experience, and the deaths SCD have occured in the age 30 to 45 range.
        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

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        • #5
          Re: HCM Across Generations

          Hi!

          In my husband side of the family there is a similar 'story':
          Grand-father - mild form of HCM (no obstruction), no symptoms.
          Father - mild form, progressive, symptoms.
          Grand-son - Severe HOCM. severe obstruction.
          Both father and son had their AICD implanted.

          At the beginning there was no explanation for the reason and then one doctor suggested that it may be that the father "got some presents" in form of genes (we have the familial type of HOCM)that made the Hocm more severe in each generation.
          We were part of a genetis study that found the "marker" with the gene causing the HOCM in our family. It was a big help planning the family and doing studies during pregnancy.
          Wishes for healh, peace and love!

          Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
          Haifa - Israel.

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