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  • hereditary??

    well after being diagnosed at 16 and now being 21 im still a little bit confused, if i remember correctly my doctor said hcm is hereditary but neither of my parents hav hcm neither has my sister my mothers parents do not suffer from the conditon, neither did my fathers mother, howeva my dads father died age 51 from a heart attack many years ago but back then they didnt know about hcm or do autopsys,

    none of my fathers family (his brothers or sisters) have any heart problems

    am i just unlucky that my genetics decided to give me hcm or do you think it could of skipped a few generations from my grandfather

    please excuse any spelling or grammer mistakes

  • #2
    Re: hereditary??

    Tom - Most likely one of your parents has the HCM gene, but the gene just has not "turned on" for them. Having HCM involves many factors...one is just having the gene in your DNA makeup. Then, there are other factors that make the gene active such that you manifest the condition. So, if you grandpa had HCM, and then your dad doesn't show it, it most likely means that he has the gene, but it hasn't expressed in him.

    It is still recommended that both your parents and your siblings all be tested regularly for HCM. If it is thought that your grandfather had HCM, then your aunts and uncles on that side should be tested too.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


    • #3
      Re: hereditary??

      We had a similar situation in my family. My son died from HCM. The family has been tested and nobody has it. They said he could have had the first "mutated" gene. That's some honor. I guess somewhere along the line somebody had to be the FIRST, but I wish it hadn't been him. GO FIGURE.
      As they say, "If it wasn't for BAD LUCK, I wouldn't have any luck at all."

      Take care.
      Son died of cardiac shock second to HCM at age 36.
      Live Well...Laugh Often...Love Much


      • #4
        Re: hereditary??

        Same in our family. My husband has HCM, but we can't find anyone in his family that had it. His parents have died, but not heart related. Aunts and Uncles...don't have it. Our sons are clear too.


        • #5
          Re: hereditary??

          Large families on both sides,,parents in the late 80s ,,aunts and uncles older yet,,,one grandmother died of stroke at 91,, i have 6 sisters all clear and their kids..so its like 1 out 50

          dont think it is hereditary,,


          • #6
            Re: hereditary??

            Let me further explain - HCM is a genetic condition that can run in families - ie CAN be inherited - OR - you could be the first in your family to have a mutation that causes HCM - everything "starts" somewhere. While the large majority of you have HCM in your family - SOMEWHERE - and it may yet to be found in some of your family members - others of you may be the first in your family to have HCM.

            So it HCM Genetic - YES
            Is HCM inherited - YES
            Must a family member also have HCM - NO
            Could you be the first in your family to have HCM - YES
            Will your children have a chance of having the gene that causes HCM if you are the first in your family - YES - a 50/50 shot even if you are the 1st in your family.

            Does that make sense???
            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)


            • #7
              Re: hereditary??

              Hi Tom,

              I was dx with HCM at the age of 48. My brother died from it at the age of 41 (1989). After his death I went every two years for an echo. In 2000 I was dx with it.

              In 2004 I went to Tufts New England and met with the HCM Specialist there. I had family history and they concluded my father and more likely than not my grandmother (his mother) had HCM.

              My father died in 1956 from rhuematic heart disease and mitral valve prolapse at age 37. He never had rhuematic fever. My grandmother I remeber having an enlarged heart and passing out spells. She took a nap and never woke up in 1965 at age 76.

              The knowledge of the disease was nill to none back then. So think back and have your family think back there might be someone somewhere that had the symptons and just were not dx.

              Good luck



              • #8
                Re: hereditary??

                This question confuses a lot of people! Saying that something is "hereditary" doesn't mean that if your parents have the disease, you will too, or anything that simple. What it means is that children tend to resemble their parents, in a statistical sense. That means that if your parents had HCM, you're likely to as well, not that you will.

                There's a lot of evidence that the actual causes of HCM are indeed rooted in genes. But genes aren't simple switches that turn something on and off -- the consequences of having a particular gene depend on (1) what all the other genes in your body are doing, and (2) your environment -- everything from whether your mom smoked cigarettes to your nutrition throughout your life.

                So if you inherit an "HCM gene" you're inheriting something that may or may not cause actual symptoms in your lifetime. It depends on a lot of other things. The fact that HCM runs so strongly in so many families, and that over 400 different gene mutations have been identified that contribute to HCM, tells us that inheritance is a really important part of the picture.

                But genetics involves more than just inheritance too -- it involves mutations. As Lisa pointed out, every variant of every gene started as a mutation. All of us differ from each other genetically in a number of ways. Some are completely unimportant (they don't actually affect the way your body works at all), some are fairly unimportant (say, eye color), some have major effects (like HCM). All of those differences started with a mutation somewhere. Human geneticists will tell you that every individual, on average, has a couple of completely new (de novo) mutations.

                So your HCM might come from a new mutation, or (actually more likely) some of these HCM genes have been in your family for some time, but haven't led to observed symptoms for a couple of generations.

                I'd add that many people can't even make a very strong statement about whether HCM is in their family, for a variety of reasons. First, it wasn't described as a distinct condition until relatively recently. My grandfather had a "bad heart" but died before anyone described HCM. Did he have HCM, or something else? No way of knowing. Second, people develop symptoms at various times of life -- I was 47 when I was diagnosed. They also die of other causes at various times of life. If I'd been so unlucky as to develop, say, kidney cancer in my early 40's, my obituary would say "he didn't have HCM" because I wouldn't have been diagnosed with it by the time I died. Epidemiologists call this "competing risks" -- it means that we all die of something, once. And it means that even if I'm only considering relatives who died well after HCM was described as a disease, I can't conclude that they didn't carry HCM genes just because they died of something else.

                Myectomy on Feb. 5, 2007.


                • #9
                  Re: hereditary??

                  The only clue I ever had was that my mom told me one time about 15 years ago that she had an enlarged heart. I never thought much more about it. I didn't research it nor did any of my Drs. ever do an utra-sound on me. I was passing all my treadmill tests with flying colors (used to jog and swim alot) and my Cholesterol was low......so what's to worry about.

                  Then one day symptoms started showing up, I went downhill with regard to SOB, and lack of stamina pretty quick and now I've stabilized (I hope)....and the meds seem to be helping abit. (More will be revealed on that front)

                  So....I guess in retrospect, my mom probably had it, but I'll never know.

                  Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic


                  • #10
                    Re: hereditary??

                    No one in my family has HCM but me. There is no record of any grandparent, parent, siblings, aunts, uncles or cousins with the disease or dying an early death. I guess I am just the lucky one. Most people in my family live into old age. At least into their 80s and 90s. My heart has been a mess from an early age.