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Being born with HCM


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Tigger1 Find out more about Tigger1
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  • Being born with HCM

    I have a question that maybe someone will answer for me. Can a person contract HCM thru other means, such as an organ transplant, blood transfusion or bone marrow transplant. They say no question is a dumb question...

    " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

  • #2
    I think the short answer is no, you can't get it that way, but I'll let those who know more than I do answer in more detail. I do know that HCM'ers are eligible to donate bone marrow, so I can't imagine it being "passed" to anyone that way.


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


    • #3
      When I was first diagnosed they suspected a viral cause. They had even found traces of the virus in my blood test. But, after much research we came to the conclusion that it was hereditary. Cousin died at 29 SCD. I think it is like a .01 chance of getting it that way. But, it still would not be contagious in the way that you are implying.

      They can do a biopsy I believe to tell if it is genetic or not but since treatment is the same they typically do not do that.

      Mary S.


      • #4
        This is so interesting. Just this afternoon my MIL and I were wondering if a childhood bout of encephalitis might have caused my husband's HCM. His sister has screened clear, and although his parents have not been screened, they are both in their 70's and in exceptional health. Also, there is no significant heart history in his family.

        Do we know yet what causes someone to develop a spontaneous mutation which leads to HCM?



        • #5
          OK Guys, here we go,
          It has been proven beyond a shadow of a doubt that HCM is a genetic disease – more specifically, a gene variation from the norm. Genes are the code/blueprint for and in every cell of your body. You can pass it on through birth an average of 50% of the time, and once in a while good old Mother Nature decides to try something new and makes the genes of a child a little different then those of both the mother and the father.

          This process, along with applied ‘survival of the fittest’ strictures has improved our species over the millennia. When the gene variation breeds true and is superior to the genes of the parent, the superior trait or traits will eventually crowd out the inferior ones from which they sprang, and we become improved. Conversely, if the gene variation proves to be inferior, or does not breed true, – then that deviation will eventually die out.

          Can you catch HCM from somebody else? No easier then catching something that will transform every cell of your body – i.e. Not bloody likely. If we transplant a part of a person with HCM onto or into a person that does not have HCM, will that person get it? Remember, it will have to mutate every other cell in the host body – and I don’t know of anything capable of doing that.

          So, if someone has HCM did they get it from their parent? While not quite 100% of the time, it is a percentage asymptotically approaching that number. I don’t think anybody has yet to discover exactly what the deviation from 100% is, but it is understood to be quite small.

          By the way, I wonder what would happen in the case of a non HCM person getting a heart transplanted from an HCM donor. Would the HCM heart, all of who’s cells have the HCM gene deviation continue to develop in the HCM pattern, or is the actual trigger outside the heart and the new replacement cardiovascular cells be developed without the deviation? Would this heart be ‘cured.’ Hmmm, anybody have some spare mice?


          • #6
            Hi, Burt:

            Thanks for your response. I understand what you are saying, and in fact in our discussion I told my MIL that I didn't see how a virus he caught as a child could change his DNA. I also appreciate that even if my husband's case is the alpha case in this family's history, from here on in we're dealing with a genetically inherited trait.

            That said, every family which now deals with genetically inherited HCM, at some point would have had that initial genetic mutation which led to HCM becoming part of their DNA. Is it unreasonable to ask if there is some particular agent which could cause the developing DNA of people across the world to mutate in similar fashion to cause the heart tissue to form in what is now known as HCM? We know, for example, that if a mother is exposed to Rubella while pregnant it will very likely effect the developing fetus, but that the specific effect varies from case to case. Admittedly, this isn't a case of a change in DNA, but it does show cause and effect. Has anyone ever looked for a causitive agent for that alpha case of HCM in each family? I would think that the odds that people around the globe, who are unrelated in all aspects of their lives, from environment to common ancestry spontaneously developing identical mutations leading to HCM are rather remote. Just think, if a causitive agent could ever be identified what a leap forward that could be for preventing this disease.

            I don't think we should ever stop asking questions. Research is always hypothesis driven, and asking the right questions can have amazing results. Often the answers to our questions won't net any significant changes to our knowledge of our world, but those times that they do are too valuable to miss.

            All the best,



            • #7
              Hi Abby,
              I’ve been going down a different path in my mind, but I can’t see any possible resolution.

              I’ve been thinking that once in a great while there is a mutant development that causes an alpha HCM person (gee I like that term.) Anyway, I was thinking that the opposite must also be true – that is, a person who would normally be an HCM candidate is mutated into a non-HCM person. The only problem is how do you find such a person so you can study his or her genetic correction? If this indeed happens, possibly a ‘trigger’ could be uncovered to ‘un-HCM’ a genetic line, and make all offspring that follow non-HCM children.

              Under normal circumstances 50% of the children of an HCM parent will have the variation, while the other 50% will not. If this holds true even when both parents have HCM, - how can they have a ‘normal’ offspring? Wouldn’t it be great to be able to cause the genetic line to once again develop normal offspring all the time?

              Finally, when somebody mentions genetic engineering most people see the down side – developing monsters of one sort or another, or everybody from the same mold – but it is much harder for people to see the up side, such as the correction of genetic flaws. There is a word of difference between the two. I guess it falls into the same fear pattern developed when talking about stem cell research. Anybody with any brains at all understands the inherent good in variations while still working to correct the deficiencies.

              I could go on and on, but I’m getting a headache.


              • #8
                Hi, everyone,

                It looks promising that I am actually online and hopefully long enough to post, so I'll try to jump in here with a couple of comments. I think there are two separate issues here:

                1. Is all HCM hereditary? I think that is the nature of Tigger's original question. In other words, in families with completely isolated cases of HCM, could the cause be something other than a genetic mutation? Saying it yet another way, could something other than a genetic mutation cause permanent changes in the heart muscle of an isolated individual? I have no idea, but I think we should look at it this way:

                All HCM is genetic until proven otherwise and so far all HCM that has been tested is genetic. All seeming cases of HCM that are not genetic have been showed to be caused by untreated and persistent hypertension. These, then, are not HCM. Thus, if another cause were ever found, once the cause was found, the disease would not be HCM.

                2. As to the alpha HCMer (I also like that term), information about the nature of inheritance can answer that question. We know that the "alpha HCMer" in each family did not have HCM. This person had a genetic mutation in their testes or ovaries. It is this mutation that was passed to their offspring. There may be a trigger such as a virus or chemical or any of a nearly infinite number of possibilities, but also there may just be a gene in an area that frequently mutates.

                Hope this helps! I also hope that this means that the university has worked out its problems (at least 5 or 6 so far) and we are connected to the outside world again!

                I will post an update on me and my family in a few minutes, if this connection lasts!



                • #9
                  I found this article quite interesting. The Merck manual is a very reliable source. It is right up there with the PDR as far as physician use goes.

                  Hypertrophic Cardiomyopathy

                  Hypertrophic cardiomyopathy includes a group of heart disorders in which the walls of the ventricles thicken (hypertrophy) and become stiff, even though the workload of the heart is not increased.

                  Generally, hypertrophic cardiomyopathy affects men and women equally. But among older people, it is more common among women than among men, mainly because women live longer than men. It occurs in about 4% of older people.

                  Hypertrophic cardiomyopathy may be present at birth (congenital) or acquired later in life. Congenital hypertrophic cardiomyopathy is caused by an inherited genetic defect. Acquired hypertrophic cardiomyopathy may be caused by such disorders as acromegaly (excessive growth due to overproduction of growth hormone, usually by a benign pituitary tumor) and a pheochromocytoma (a tumor that overproduces the hormone epinephrine). Neurofibromatosis, a hereditary disorder, may also cause hypertrophic cardiomyopathy.

                  Symptoms and Diagnosis
                  Symptoms include fainting (syncope), chest pain, shortness of breath, and awareness of irregular heartbeats (palpitations) produced by an abnormal heart rhythm (arrhythmia). Fainting, usually after exertion, occurs because the heart does not supply the brain with enough blood. The heart cannot supply enough blood, for example, because the heart rhythm is irregular or because the stiff, thickened ventricle does not fill with blood adequately and impedes blood flow from the heart. Fainting is more likely to occur after exertion because during exertion, the heart rate increases and more blood is pumped out, thus overcoming, to some extent, the impediment to blood flow. After exertion, the heart rate slows and the amount of blood pumped out is no longer enough to overcome the impediment.

                  Shortness of breath develops because fluid accumulates in the lungs. Fluid accumulates because the thickened, stiff heart resists filling with blood from the lungs and blood consequently pools in the lung (pulmonary) veins.

                  Because the ventricle walls thicken, the mitral valve (the valve that opens from the left atrium into the left ventricle) may be unable to close normally, resulting in a small amount of leakage. This abnormality increases the risk of infective endocarditis for people with hypertrophic cardiomyopathy. In some people, the thickened muscle blocks the flow of blood out of the heart below the aortic valve; this variation is called hypertrophic obstructive cardiomyopathy.

                  Doctors can usually make a preliminary diagnosis of hypertrophic cardiomyopathy based on the results of a physical examination. For example, the heart sounds heard through a stethoscope are usually characteristic. Echocardiography is the best way to confirm the diagnosis. Electrocardiography (ECG) and a chest x-ray are also helpful. Cardiac catheterization, an invasive procedure, is performed to measure pressures in the heart chambers only if surgery is being considered.

                  Prognosis and Treatment
                  About 4% of people with hypertrophic cardiomyopathy die each year. Death is usually sudden, presumably due to an abnormal heart rhythm. Death due to chronic heart failure is less common. People who learn that they have inherited this disorder may wish to obtain genetic counseling when they plan a family.

                  If acromegaly is the cause, octreotide, a synthetic hormone, may be given to block the production of growth hormone. If a pheochromocytoma is the cause, an alpha- or beta-blocker may be given to block the effects of epinephrine. Alternatively, the tumor that is producing the hormone may be removed surgically or destroyed by radiation therapy.

                  Treatment of hypertrophic cardiomyopathy is aimed primarily at reducing the heart's resistance to filling with blood between heartbeats. Beta-blockers and calcium channel blockers--taken separately or together--are the main treatment. Both reduce the extent to which heart muscle contracts, so that the heart contracts less forcefully. As a result, the heart can fill better and, if the thickened muscle was blocking blood flow, blood can flow out of the heart more easily. Also, beta-blockers and some calcium channel blockers slow the heart rate, so that the heart has more time to fill. Sometimes disopyramide, a drug that decreases the strength of heart contractions, is also used.

                  Surgery to remove some of the thickened heart muscle (myectomy) can improve the flow of blood from the heart, but it is performed only when symptoms are incapacitating despite drug therapy. Surgery can relieve symptoms, but it does not reduce the risk of death.

                  Before a dental or surgical procedure, antibiotics are usually given to reduce the risk of infective endocarditis.

                  Excerpted with permission from The Merck Manual - Second Home Edition Whitehouse Station, NJ; Merck & Co., Inc, 2003,2004.

                  Mary S.

                  PS I'm still trying to locate the data on viral causes of HCM that my cardiologist refrenced


                  • #10
                    here is my question...

                    If someone's HCM was "aquired", will it , from that point forward,
                    then be heriditary. If it was aquired after the offspring was conceived,
                    how does that play a role here.

                    We cannot find any history of HCM in felix's family at all. One theory
                    is that back in the day, when women were trying to get pregnant , they
                    took drugs that turned out to not be so great. could this have
                    caused the initial "mutation".

                    Felix did not discover his heart murmur until after my first child was
                    born. Could he have had HCM before that, more than likely, but
                    it had not presented itself. Yet he was never symptomatic.

                    I wish there was a simple genetic test that we could do on our children
                    to know. This way I would be able to prepare them. To steer them
                    away from athletics, etc. I am hoping that the conference will have
                    updated information about genetic testing.



                    • #11
                      "acquired" is a poor choice of words. You are born with your genes - they mutate as you are formed (if your HCM is spontaneous and not hereditary). You may not show clinical signs of HCM until later in life - sometimes not until you are 60-70 or even 80 years old - some of us are detected at age 12 or even as young as birth.

                      Can you "catch" HCM - well yes I guess you can - but you are in your mothers womb at the time. Can you "catch" HCM at other times - No you can not.

                      Hope this helps.

                      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)


                      • #12
                        Hi Sandy – and others,
                        First let me address the Merck entry from 2003-2004. I was astounded to see this definition in such a prestigious reference book. It is commonly understood that HCM is a genetic disease. Every case of HCM that has ever been so tested has shown this genetic variation from the norm. I don’t know how Merck can state that it can be acquired by any other means – when no other means has ever been found.

                        A few asides – I know it takes many, many, many cases of the same type to begin to build a consensus or belief that something is true, while it only takes one case to prove it false – but that one case has not been found to date.

                        Also, no case has ever been found that some medication, situation, or ailment has been able to change the DNA of every cell in a living thing. The whole study of DNA identification is based on the fact that a living thing’s DNA does not, and can not be made to change.

                        I also was quite surprised that the Merck entry named myectomy as one possible remedy to an HCM circumstance, but it never mentions ablation at all – especially now when it is being hawked in so many institutions that are trying to ‘get into the act.’

                        In any case, at this point in time, I do not believe all the possible variations in the DNA that are indicative of HCM have been identified. Consequently, genetic testing for HCM, which is still in its infancy, is taking the approach of identifying the variation in the parent and then looking for a similar variation in the child. In this process they are trying to build a database of all the HCM genetic variations and some day hoping to test a subject for all these variations and make an accurate determination.

                        Let me give an example that shows how the current method of testing is not foolproof. Supposing we have two parents with HCM but with different genetic variations. One has symptoms and has been identified, while the other has no symptoms (at least so far) and remains unidentified. When they do a genetic test for HCM in the child, they will be looking for the variation of the parent who’s HCM has been identified. However, the child may have the other parent’s variation and go unidentified – yet still develop symptoms and subsequently be identified.

                        This is one of the problems I have with the identification of alpha HCM’ers. While I’m sure such things occur, I wonder how many of them are the children of undiagnosed HCM’ers, including those who never developed identifiable symptoms. (We know how often it is being misidentified now. Imagine how it was when we knew so much less about it, and frequently went to doctors only for catastrophic problems.)


                        • #13
                          Hi all, I have some questions.

                          "HCM'ers have a 50% chance of passing it to there children. "

                          Now, I have HCM, neither my parents nor grandparents have it. This means one of two things. I have a spontanious mutation, OR the odds are wrong.
                          My guess is that I am of the mutant variety. If that is true, then HCM is not just a genetic disease. Right?

                          One more thing. If HCM is part of our genetic makeup which we are born with, then isn't HCM a congenital disease, regardless of when the symptoms appear?


                          It's not what you gather, but what you scatter that tells what kind of life you have lived.

                          Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                          • #14
                            Hi Pam,
                            I’m sorry, I guess I wasn’t very clear in my explanations, or at least I didn’t tie it all together clearly.

                            First let’s take – “HCM'ers have a 50% chance of passing it to there children.”
                            A person can inherit a deviant set of genes (HCM) from a parent, or a normal set of genes (non HCM) from the same HCM parent. Think of it as a wall switch which can be on or off, half the time it’s one way and half the time it’s the other – on average. Actually, in one family all the children may have it and in another family none of the children. The gene deviations which cause a person to have HCM are called ‘dominant’ and that’s just the way they work – on average.

                            “Now, I have HCM, neither my parents nor grandparents have it. This means one of two things. I have a spontaneous mutation, OR the odds are wrong.” A more correct statement would be –

                            Now, I have HCM, neither of my parents or grandparents have ever been diagnosed with it. This means one of two things. I have a spontaneous mutation, OR one or more of my parents and grandparents have HCM - even though they were not yet so diagnosed. (It has nothing to do with the 50% chance – on average.)

                            “My guess is that I am of the mutant variety. If that is true, then HCM is not just a genetic disease. Right?”

                            You may have inherited HCM from a symptom free and undiagnosed parent or it is quite possible that you are an alpha HCM’er. No matter which way you got it, it is in your genes - and so it is a genetic disease. We say it always is genetic – by definition. If we ever find a case where the person does not have a gene deviation we have a person with a different malady – such as ‘Athletic Heart’ for example, - but that is not HCM, and it often responds to different treatment.

                            I hope that has helped a bit, and not just clouded the issue further.


                            • #15
                              Originally posted by Abbygirl2
                              Hi all, I have some questions.

                              "HCM'ers have a 50% chance of passing it to there children. "

                              Now, I have HCM, neither my parents nor grandparents have it. This means one of two things. I have a spontanious mutation, OR the odds are wrong.
                              My guess is that I am of the mutant variety. If that is true, then HCM is not just a genetic disease. Right?

                              One more thing. If HCM is part of our genetic makeup which we are born with, then isn't HCM a congenital disease, regardless of when the symptoms appear?


                              Pam, the only way to know for sure that none of your parents or grandparents have HCM also (genetically speaking) would be a genetic test. There are cases where someone carries the gene and never develops the diseasse, though. My first thought is that this is what's happened with you. Regardless of how you came by it, it's still genetic.

                              HCM isn't considered a congenital disease because to be diagnosed with HCM you have to have symptoms like thickening, hyperdynamic beats, etc. You don't typically have this at birth, although it can present itself that early. Being genetically predisposed to develop it doesn't make it congenital, though. I hope this helps.


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