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Nieces and nephews?


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Bill Find out more about Bill
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  • Nieces and nephews?

    When i was diagnosed with HCM I made sure that my daughter and my two grandchildren went for ECHOS. But I'm wondering -- how about my brother's kids? I know he needs to be tested, but what about his two boys if HIS tests are negative? Seems to me they would need to be tested anyway.

  • #2
    Re: Nieces and nephews?

    Dear Bill,

    If your brother is clear, then the kids are probably clear but there is a teensy, tiny chance that they might not be, so they should get echos too, but don't have to go every year like they would if their dad had HCM.

    take care,



    • #3
      Re: Nieces and nephews?

      It is possible that your brother carries the gene yet has not expressed it.
      Looking at full family histories - your parents, aunts, uncles, and grandparents is very important --- if there is any heart related issues or early deaths (pre age 50) THEN I woul surely test your brothers kids - IF you are the only one then I would discuss it with the childrens health care provider and let them make the call.
      This is not an easy answer.
      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)


      • #4
        Re: Nieces and nephews?

        I recently asked Dr. M Maron about this same thing. My sister tested negative, (when she was younger, but hasnt gotten tested in about 15 years) and he said my nephew should definatly get tested. His reasoning was exactly what Sarah and Lisa said about carrying the gene and not expressing it.


        • #5
          Re: Nieces and nephews?

          I have a twin brother was has tested negative for HCM so far. He has had his kids checked just to be on the safe side since we are identical

          Our kids have been checked too. Daughter was ok, son's left ventricle was minutely enlarged, so they will be following him a little closer


          • #6
            Re: Nieces and nephews?

            If you are identical twins, you share the same genetics. That means that your brother has the genotype for HCM like you do. (Unless I'm way wrong here.) Even if he hasn't expressed it, he is likely to have it diagnosed at some later time. Now, the next question is, how would you/he feel about doctors exploring the identical twin issue with HCM? There may have been research on it before, but I'm not sure. I'd think it would be something they're interested in, especially since your brother doesn't have HCM diagnosed yet. And someone tell me if I'm overstepping my bounds here!


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


            • #7
              Re: Nieces and nephews?

              When we were in Minneapolis a few weeks ago, they were very interested in the fact that my brother is showing no signs of HCM and I do. I think it would be cool to do some sort of a study, but I don't know if either of us would be interested in travelling to get a study done.

              I did have to bug the heck out of him to get tested though.

              I don't think you are overstepping.


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