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  • newly diagnosed

    I have one niece and several nephews. HCM is now diagnosed in my mother, myself and as of May 26th my 12 year old daughter. My sister feels since she does not have HCM, that her children are not at risk. Her boys were checked 4 years ago and were fine. One is now 15 and one is 20. Should she not still have her kids checked?
    Life is too short to worry about the trival things in life, So live life to the fullest.

  • #2
    Re: newly diagnosed

    Hi, Karen. The answer is yes, they should still be tested, but not as often as your own kids. There are people who don't test positive until they are adults even when they've been tested before. Some call this adult onset HCM. You sister should be tested every 5 years herself. Her kids should be tested that often too, but if she continues to test clear, then her children will most likely too. I think research and data is starting to point to the fact that some people can carry the gene without expressing it. It doesn't happen often, but it does happen. I hope that answers your question.

    About your daughter, I'm sorry to hear she's got HCM too. At least you have enough knowledge to help her get the quality care she needs and to help her make informed decisions on how to conduct her life, no competitive sports, etc. I'm sure that she will be just fine.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: newly diagnosed

      Ditto - to what Reenie said.

      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


      • #4
        Re: newly diagnosed

        that is correct they all should be tested HCM is known to skip generations at times and also is more commonly found in half of the children for example 4 kids 2 have HCM 2 do not its also possible and rare for all 4 to have it but even more rare for none of the 4 to ahve it. The people that HCM does not effect in the family gene still have HCM it is not decectable due to it not being severe enough for the tests to show it therefore that person becomes a carry and can transfer it on to the next generation.
        An enormous amount of people may have HCM but there are only certain ways to find it and most doctors will pass it off as being asma or a heart mumur. The best way to go is a speacialist.
        When i first went to see a doctor in november he said there wasnt any abnormalities and that everything was fine. Shortly after in december i was told to come in for they had found slight deviations. I went in again this time to a clinic and a different doctor this doctor said that i had a heart murmur, however he did refer me to a speacialist, due to the fact that he hadnt enough knowledge with HCM to give me a full diagnoses.

        take care

        Patrick Von Mende

        Comment


        • #5
          Re: newly diagnosed

          Patrick, you have the basic idea of HCM down, but you're a little confused on the facts. Please keep reading. You're off to a good start with gaining knowledge. Please, give Lisa a call. She, or your doctor, can help you straighten the facts out.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: newly diagnosed

            HCM is autosomal dominant. that means that each person with HCM has a 50/50 chance of passing it on to EACH child, each time. it is like flipping a coin each time you have a baby.

            the odds of having HCM when your parent doesn't but your grandparent does are very, very low but they exist. likewise, the odds of having it develop later in life are lower than finding it earlier.

            the recommendation is like reenie said, every 5 years in low risk groups and annually in kids whose parent's do have it (higher risk).

            s

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            • #7
              Re: newly diagnosed

              HCM is usualy a familial condition and represetns a geneticaly transmitted disease. And it is autosomal dominant, meaning HCM appears in about 50% of the people in each subsequent generation. Parents transmitting the diseas is therefore statisticaly about 1 in 2. There can also be sporadic cases where a person has HCM but no other relatives in the family are known to have HCM.
              Thanks for bringing that to my attention

              Comment


              • #8
                Re: newly diagnosed

                o yes and one more thing. The genetic skipping of a generation is rare but can occur when an individual is a gene carrier but does not have evidence of the disease on the echocardiogram. the mutant gene does not actualy skip, the HCM gene in that individual does not express its self fully in such a way that we can not see evidence of the disease with the echocardiogram.

                take care

                Patrick Von Mende

                Comment


                • #9
                  Re: newly diagnosed

                  Patrick -
                  I would say you have a good handle on the genetics issues.
                  Welcome to the board!
                  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

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