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Is all HCM hereditary

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Rachelle Mother of Dylan, 15 and Zach, 13. Dylan recently diagnosed with HCM. Find out more about Rachelle
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  • Is all HCM hereditary

    While communicating over the internet with a cardiologist once, he made a comment that not all forms of HCM were hereditary. When I asked him to elaborate he didn't resond. I'm sure he didn't want to get into it via e-mail. Is this true or are all cases of HCM able to be inherited by your children?

  • #2
    details

    Hi,

    Please read the rest of this site (not just the board) for more info on HCM genetics.

    HCM is autosomal dominant, so each child of someone with HCM has a 50/50 chance of having it.

    There are forms of cardiomyopathy that are viral or otherwise induced, or some people (very, very rarely) have Marfan's or Pompe's syndromes that cause HCM as a "side effect" of the core disease.

    However, actual HCM is just genetic.

    S

    Comment


    • #3
      It appears that if you have the gene - (as Sarah stated about) the chance is 50/50 that your child will have it.
      HOWEVER - a child can be the 1st to have the mutation and the line then begins with them.
      This may be what he was refering to. These spontanous cases are thought to be in about 25% of cases of HCM - Although I think as we learn more about genetics this will not be the case - I think it is far less.

      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
        Thank you very much for the information. I have HCM that was essentially found by my OB when I was pregnant with my first child. My boys are 2 1/2 and 4 and I had them screened two years ago and I have an appointment scheduled for again next week. I am living every day with anxiety, guilt, fear and anger that my children may inherit this disease. I know it's a very real possibility. I cannot wait until it "shows up" on an ECHO so I am searching for someplace that might do genetic testing NOW. I don't care about the cost or the location. Do you know of an institution that is doing gene testing for HCM commercially? Also, if HCM was from a viral infection or induced can they tell this with genetic testing or how do they know? Thanks! Rachelle

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        • #5
          1st - HCM can not be "caught" by a virus - it is genetic - you have had the gene all your life and likely the thickening in your heart appeared long before you were diagnosed.

          RE Genetic testing - send me a PRIVATE EMAIL -
          Include your name - address, phone number and the statment...Please send my information to the genetics lab and I will forward you information to them and they will contact you.
          This hold for any of you seeking genetic testing - Also if you have sent your name already the lab does have it and will contact you ASAP
          The lab currently seeking 500 participants is the Seidman Lab at Harvard (see our links page) - -They have a grant to allow them to look at 500 people - this program is FREE and is research. It may be months, years or you may never get a result this because not all the mutations have been found at this time.
          My own family was screened by this lab and I can tell you that they are highly professional and I find they are as concerned with genetics as they are with being kind to the families involved in the research.

          I understand 110% your fears for your children - but I do offer this -
          Have you had a "good" life? - I know I have, and even if my daughter has HCM she will have a good life too. Yes I do hope that HCM is something she does not have to deal with for herself or for her children. I do know my dad is 67 yrs old and doing rather well with his HCM and I am OK at 34, yes we have ICD's and meds...so what life is good

          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


          • #6
            I interpreted Sarah's response to mean that if a person's form of cardiomyoppathy was viral or otherwise induced that it could not be genetic. But I think you're saying that once it is a part of you it is in your genetic makeup. Right?

            After receiving the Heart Link newsletter, I immediately contacted Barbara McDonough at the Seidman lab. She is sending me the blood sample kit needed to be a part of this research. I am very grateful for this opportunity. Do you mind me asking if they screened your daughter when they screened your family? Other than this do you know of any commercial screening available?

            My biggest fear for my children is sudden death. They are very active and my oldest is starting t-ball this fall. I will continue with screenings every two years but what if something develops in the interim and I don't know. From my experience, they could be a symptomatic and still be at a very high risk of sudden death (septum measuring 30mm+ as I am).

            Comment


            • #7
              Commercial screening is not yet available.
              My husband and I have choosen to keep my daughters medical issues private at this time. Please do not read anything into that simply stated there may be implications for those screened with HCM such as insurance matters that remain private and not part of any medical records when done in a research situation such as the one we are speaking of.
              If I answer your question and my families gene has been found it would be clear that we had the knowledge of her status. Somethings are better left not discussed.
              I hope you see my point.
              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
                cardiomyopathies

                Dear Rachelle,

                Please let me clarify a few things....

                First, hypertrophic cardiomyopathy is only _one_ kind of cardiomyopathy. Viral cardiomyopathy causes dilated cardiomyopathy or enlarged hearts. This is very different from HCM --please read the rest of this site (not the board, but the site) for pictures of what an HCM heart looks like.

                When you have an echo, they can tell the difference between different cardiomyopathies (dilative, hypertrophic, etc). So if you are being told you have HCM, then you don't need to look for a viral cause b/c there isn't any for HCM, only a genetic mutation.

                There is no genetic test for HCM like there is for breast cancer or other things. HCM is currently known to be caused by about ten different mutations, so the only way to know if you have one is by mapping your whole DNA sequence (well, a big chunk of it, anyway). As opposed to other disease where they just pull this one piece out and it says "yes" or "no" --we can't do that with HCM. It is too complicated.

                So the lab will look at a big chunk of your DNA and when they get done, they'll let you know what they found. However, it may take them a few years to get back to you.

                There is nothing you could've done differently, so try and let go of the guilt. Also, please don't freak about sudden death. There are a lot of high profile deaths and deaths do get reported here, too. However, the statistics are that only 1-1.5% of all HCM patients experience sudden death each year.

                Your kids can get an echo every year, not every two. And the odds of them jumping from a 1.3cm septum to a 3+septum in that time are very very very low. HCM is a sortof grow as you grow kinda thing --it doesn't just pop up overnight.

                THe vast majority of people with HCM live long, full lives. Truly.

                FYI: The risk factors for sudden death are fainting, ventricular tachycardia, a personal history of cardiac arrest (if you've had one, you are at risk for another), a septum 3.0cm or more, incorrect blood pressure response to exercise and a family history of sudden death (usually considered 2 or more deaths). And if you have 3 or more factors, then you just get an ICD and you are good to go. The ICD has a phenomenal success rate.

                So keep breathing. Call Lisa for info on specialists and just get the kids screened each year. There are a LOT of parents here in your boat, so please post your questions and concerns and you will get lots of support.

                take care,

                Sarah

                Comment


                • #9
                  one more thing...

                  R,

                  Lisa wasn't saying that once you have viral, then it becomes genetic. It doesn't work that way. If the form of cardiomyopathy you have is caused by anything other than genetics, then your kids are in the clear.

                  Please understand that "cardiomyopathy" is a broad term that just means "sick heart" or "big heart". Viral cardiomyopathy is a big heart from a virus. Dilative cardiomyopathy is a heart that his thick all the way around the middle. Apical cardiomyopathy is a heart thick at the bottom. Some people have cardiomyopathy from exercising too much and some from drinking too much. Hypertrophic cardiomyopathy is the left ventricle and septum are too thick from a genetic mutation.

                  Some people who have Marfan's or Fabray's disease also get HCM, but those are genetic diseases, too.

                  I hope that helps.

                  S

                  Comment


                  • #10
                    Lisa and Sarah - first, thank you so much! I've learned so much just since we've started communicating.
                    In a nutshell, I'm gathering from your responses that since I have HCM, which could have either been inherited genetically or could have been a gene mutation, my children have a 50/50 chance of inheriting it. There are no other ways I could have aquired this disease and there is no way my children could be totally exempt from inheriting HCM. As you can see, I'm new at this and I do want to know EVERYTHING I can about it. Thanks again! Rachelle

                    Lisa - I completely understand about your daughter's privacy and I shouldn't have even asked. Thank you.

                    Comment


                    • #11
                      Not a problem...
                      just to keep clear.. it is all genetic - what is in question here is if you got the gene from one of your parents or if you are the 1st to have the gene. In either case it is a "gene mutation"
                      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


                      • #12
                        Just some clarification on dilated cardiomyopathy -
                        Dilated cardiomyopathy usually is seen as an enlarged heart, with enlarged cavities. The walls are thinned and weakened. The left ventricle, once again is the one responsible for the entire body, while the rt ventricle is supplying the lungs, so focus is usu on the left vent. It is most often the result of long-standing coronary artery disease and a heart that is "wearing out", but can result from valvular diseases (following rheumatic fever, aortic or mitral stenosis, etc) or a viral infection. It can also result from HCM, and multiple other causes. It can appear in some for no apparent cause and seems to have a familial link in those situations. There are rarely any clear-cut situations in this world. I think when Sarah described dilated cardiomyopathy in posting above, she meant to use the word, concentric, instead of dilated. Linda

                        Comment

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