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Passing HCM on to kids

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  • Passing HCM on to kids

    My brother and sister have both had an echo done to look for HCM. Brother is definately clear sister still waiting to talk to DR but echo tech said she doesnt see any signs of it. They were told that it doesnt skip a generation. In other words my mom has it but they dont so their kids wont have it. It seems odd to me that if it is in the gene pool it isnt possible for it to show up in their kids Is their doctor right about that?
    2.6 Septal Measurement
    ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
    "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
    ~Steel Magnolia's~

  • #2
    Re: Passing HCM on to kids

    Hi Gayle,
    I’m very glad to hear that both your siblings show no signs of HCM. As to skipping a generation – I don’t think the final answer has been reached by the researchers yet, but I don’t know. I’ve heard stories both ways on it.

    As far as passing things on to your kids, it always works that way – except in one case. And that is insanity – you get that from your kids.
    Burt

    Comment


    • #3
      Re: Passing HCM on to kids

      Originally posted by gayle
      Is their doctor right about that?
      Not all people who carry the HCM gene(s) develop the disease, so its impossible to tell without genetic testing. An echo alone isn't enough.

      Comment


      • #4
        Re: Passing HCM on to kids

        All i can say is that my dad doesn't have the disease but his first born and i have it and my fathers mother died from sudden cardiac death in her 40s also 2 brothers and a sister so i don't think you have to have the disease to pass it on to your children my family is proof positive of that all you have to have is the gene

        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Re: Passing HCM on to kids

          According to the experts, it's rare but possible for someone to carry the HCM gene and not display thickening of the heart muscle. There may be other issues that you can't see as readily such as difficulty of the muscle to relax during filling, etc. I'm glad they both test negative at this point. If it were me, though, I would still screen my kids every 3-5 years until adulthood, then maybe 5-10 years after that just to be sure.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: Passing HCM on to kids

            Reenie

            My dad had open heart surgery 15 years ago and they didn't say anything of it then and my brother was still alive in bad shape but still alive, we asked about the thick heart because of my brother and they said he had a normal heart except for the blocked arteries, back then they called it IHSS of course, i was just saying that it does happen because my dad is living proof of it and he just had a heart attack a couple of months ago and they did more tests and i talked to his doctor and told him about my disease and he said my dad doesn't show any signs of having it.... Thank God, although he said he should be the one with it and not his kids or grandkids, they even checked my daughter and her children even though she doesn't have it, and Dr. Gilligan said they need to get checked even though my daughter doesn't have it , because of my dad having the gene and still doesn't have the disease is all the more reason to have her children checked, you are right, for peace of mind i would have everyone checked in the family just to be sure, they don't know enough about the disease to say 100% about anything, the doctor told my daughter to have the kids tested once every 5 years being she doesn't have the disease, but my sons kids get checked every year being he does have it, i didn't mean to step on anyones toes, it was just from my experience in my family

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Re: Passing HCM on to kids

              When my hubby was diagnosed, we had all info from him sent to my mom in laws cardiologist. No one in the family had this disease that we knew of at that time. They kept telling us that she had coronary atery disease. No signs of hocm. Well she died last nov. of complications of hocm. They admitted that she had been misdiagnosed. Since then we have tracked through the family and found that ten people have died due to this disease. Please keep screening family members, whether your parents had it or not. It is in the family genes. There just isn't enough research data available. Bless all!!
              tommysgirl wishes you a blessed day with many laughs and smiles along the way!

              Wife of Tommy Hall passed 9/22/07
              HOCM, (AA x2, CABG, RFA, Myectomy x2, Maze)
              Tomy 13
              Amber 25
              grandchildren Aiden 6, Maddie 4

              Comment


              • #8
                Re: Passing HCM on to kids

                With our current understanding of the disease it would be well advised to have your sibilings re-screened every 4-5 years and the kids screened as they enter puberty. Re screening every 1-2 years for the kids would be well advised.
                HCM does not "SKIP" but the gene may lay 'quite' until late in life.

                Best wishes!
                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


                • #9
                  Re: Passing HCM on to kids

                  When I found out all my heart issues where inherited I had my children checked. My 9 yr old is clear so far. My 13 yr old was found to have a mild mitral valve regurg. but no sign of HOCM. No one that we know of had this condition. I do know my grandmother and one of her son's my uncle died suddenly of a heart attack. This may have been HOCM I suppose. Other than that I am the only one that we know for sure has this problem. My mother says she thought she remembered someone at the hospital telling her that the HOCM was due to the over worked mitral valve because it had a severe leak. This could not be so if HOCM is a disease made up in the cell structure of the heart at birth right?
                  April
                  Mitral & Aortic valve replacement w/St. Jude valve HOCM -myectomy 6/21/04
                  EP Procedure 4-19-04 Wolfe Parkinson
                  Heart Attack 4-19-04
                  Stroke 6-03
                  Bacterial Endocridites 6-03

                  Comment


                  • #10
                    Re: Passing HCM on to kids

                    April -
                    Call me today lets go over all of this. YOu have been given some misinformation and we need to make sure you have a clear understanding from this point forward.

                    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


                    • #11
                      Re: Passing HCM on to kids

                      As a layman, I want this to be clear to all of the other layman on this board.
                      HCM is a genetic condition. Each of us has a mutation within our DNA.
                      At this point of time they have found about 80% of the mutations that cause HCM, which is why the genetic tests that they offer are only 80% effective.
                      HCM does not skip a generation. That would be impossible. When Lisa uses the term ‘lay quiet’ she means that it doesn’t express itself. I just spoke to a person with HCM whose sister has HCM as well, but neither parent has had HCM related symptoms. However, one of them MUST have it. Even though the parents have not expressed symptoms, this doesn’t mean they won’t. They just need to be checked by a qualified cardiologist from time to time.
                      We each have 46 chromosomes. When we procreate, the mother gives the child 23 chromosomes and the father gives 23. Should the parent with HCM pass on the mutation in their 23 chromosomes to the child, then the child will have HCM. Thus the reason why 50% of children who have one parent with HCM will get the condition.
                      Note: If both parents have HCM then all their children would get HCM, so if you’re single, don’t come to the annual meeting looking for a date.
                      Now the child with HCM has a 50% chance of passing HCM to their children. The child who did not get the mutation, has 0% chance of passing the mutation to their children. They have no mutation to pass. Future generations from the child without the mutation do not have to be concerned about getting HCM. This is not like blue eyes, where there is a 50% chance the first generation, 25% chance the next generation, 12.5% chance next, etc (assuming that the spouse had no incidence of blue eyes in their family each generation).
                      What gums up all the stats is the Sporadic Mutant (that’s me). These are people who while getting conceived there is a genetic typo in writing their DNA. The mutation that causes HCM is written at that moment, making them the first in their family line to get HCM. But even though they are first, they still have the mutation and have a 50% chance of passing it on.
                      The concept of ‘skipping’ a generation is a result of old, incorrect assumptions of the disease. Science knew about what is now termed HCM, back in the 19th century. But the current level of expertise with HCM has only been around a decade or two. And that level of expertise is shared by very few physicians. Which is why this website exists.
                      Fx

                      Comment


                      • #12
                        Re: Passing HCM on to kids

                        Originally posted by Lisa Salberg
                        April -
                        Call me today lets go over all of this. YOu have been given some misinformation and we need to make sure you have a clear understanding from this point forward.

                        Lisa
                        I have looked for a number to call and I guess I just have not learned my way around the site well enough. Please give me a number to call.Thanks
                        April
                        Mitral & Aortic valve replacement w/St. Jude valve HOCM -myectomy 6/21/04
                        EP Procedure 4-19-04 Wolfe Parkinson
                        Heart Attack 4-19-04
                        Stroke 6-03
                        Bacterial Endocridites 6-03

                        Comment


                        • #13
                          Re: Passing HCM on to kids

                          April, At the bottom of the page;973-983-7429. It takes awile to see it all. Good Luck
                          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

                          Comment


                          • #14
                            Re: Passing HCM on to kids

                            Note: If both parents have HCM then all their children would get HCM, so if you’re single, don’t come to the annual meeting looking for a date.
                            This isn't exactly correct. There would be a 25% chance that the child has no HCM at all. There is a 50% chance that the child has HCM. There is a 25% chance that the child would get a double dose of HCM from both parents. I can't put in a chart here, but try to follow along.

                            A=HCM
                            B=no HCM

                            Both parents are AB.

                            One child is AA.
                            Two children are AB.
                            One child is BB.

                            A B
                            A AA AB
                            B BA BB

                            Gosh, this isn't showing up like I'd hoped, but I hope you can get the picture.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Re: Passing HCM on to kids

                              I found a few charts that might help explain this better.





                              Reenie

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

                              Comment

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