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Chuck B Find out more about Chuck B
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  • #1

    genetics and hcm

    I am still baffled by the source of my hcm. I was diagnosed 35 years ago and no one in the family has shown any symptoms(I have 5 brothers - all atheletes). My mom had an eco and was cleared and my dad is now 87 with no problems. Both of my children have had eco's and they have been negative thank god. Is there ever a source that is not genetic?

    Second question. As I mentioned, both of my girls have been checked for hcm(ages 24 and 19) and are clear so far. Are the odds good that they will never show up with desease and how often should they be tested?

    Thanks ,

    Chuck B
    Chuck B

    An inch is a cinch, a yard is hard
    Tags: None
  • #2
    Re: genetics and hcm

    Current recommendations call for them to be screened every 5 years throughout life.

    You could well be a sporatic mutation and you may have NOT passed it on to your kids....but please encourage them to screen every 5 yrs just to be sure.

    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

    • #3
      Re: genetics and hcm

      I, too, am a mutant haha. So far no one in my immediate family has HCM and as far back as my grandparents can remember no one has had any type of heart trouble. I just hope in the event that I have kids someday they do not get it.

      Comment

      • #4
        Re: genetics and hcm

        Hi Chuck -

        When my son was diagnosed at two days of age, we also wondered how he came to have this. Nobody in either family ever had any signs or symptoms of HCM. I have two young daughters who have been cleared (so far - will keep checking as suggested) and a newborn son who has yet to be checked. Keanu (the affected son) is currently going to a geneticist, requested by his cardiologist. It appears as though Keanu may also be the mutant in our family

        SheliRenee
        Mom of Keanu
        4 years old (will be in March)
        Dx at 2 days old with Biventricular hypertrophy
        Dx at 6 weeks with HOCM
        Dx at 5 months with V-tach
        Dx at 3 with Noonan Syndrome

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        • #5
          Re: genetics and hcm

          I just love that term "sporatic mutation ".
          I'm thinking of having a T-Shirt made for the June conference with that on it. :P
          So far, there is no sign that anyone in my family in my generation has HCM. No one in my parents generation had it either. There is a slim chance that my grandfather and one other person of his generation may have had it because they both died suddenly in their late fifties, early sixties, but due to the classic jewish diet, they more likely just had heart failure. We'll never know anyway.
          So there is a 98% chance that I'm a sporatic mutation. Woo Hoo!
          Fx

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          • #6
            Re: genetics and hcm

            Originally posted by felixdacat
            So there is a 98% chance that I'm a sporatic mutation.
            We might have guessed
            "Some days you're the dog... some days you're the hydrant."

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            • #7
              Re: genetics and hcm

              Please understand that a "sporatic mutation" means it "started with you"... your children still have a 50/50 shot of getting the gene.

              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

              • #8
                Re: genetics and hcm

                It still will make a cool T-Shirt!
                Fx

                Comment

                • #9
                  Re: genetics and hcm

                  Originally posted by felixdacat
                  It still will make a cool T-Shirt!
                  If you get this shirt made, please please take a picture and post it here for us! I'd love to see it!

                  Reenie
                  Reenie

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

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