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Family Fights because of HOCM


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Kelly&Bert Find out more about Kelly&Bert
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  • Family Fights because of HOCM

    Hi everyone Im writing on behalf of my partner who has HOCM and is currently waitng on a myectomy. I hope you will be able to clear up a few issues for us. I always thought hOCM was a genetic condtion, both my partner and his sister have it. However, His parents are both suggesting that following echos they are clear....is this possible?? The cardiologist in london suggested they should have echos again in case anything was overlooked?? This has caused major tensions in the family as everyone seems to be in denial about the condition. I suppose whay I really want to know is ...is it possible for my partner and his sistter tohave the condition but both his parent s be clear...there is no other family history of it.

    Thanks in advance.. Im so happy to have found the site, its comforting to read other peoples experiences.

  • #2
    Welcome to the HCMA.

    Let me try to help you understand this better. If he and his sister both have HCM one of the parents is a gene carrier. It is highly likely that one of the parents has some sign of HCM, however they may not show any clinical signs until they are 80+ years old.

    If you are in touch with The Heart Hospital in London, you are in good hands. If there is anything we can help with just ask!

    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)


    • #3
      HCM IS genetic. However, there are a few reasons why the parent's echos were clear...

      1. the gene was not expressed (they have it, just not the thickening)
      2. the echo was bad
      3. the gene was a mutation and the parent doesn't have it.

      The last option is the least likely, but a faint possiblity.

      At the very least, they should get follow up echos in 5 years as HCM can appear at any age. It is also important to understand that HCM causes the all of the heart muscle cells to be disorganized regardless of whether they get thick or not. Also, borderline cases of hypertrophy are easy to miss when they are not looking well or in the right place, etc.

      Good luck.


      • #4
        Thanks for your advice I will make sure Bert passes this on to his family, whether they willdo anything about it is another story. They seem to want to bury their heads in the sand.
        Another question I have is how many other members of his family should be screened...so far its only been his mum dad sister and soon our daughter...what about aunts and uncles surely if a parent is a gene carrier then their brothers or sisters could be too and could pass this on to their children....


        • #5
          Yes, if a person has HCM, their parents and their parent's siblings should be screened.

          In my family, HCM has affected exactly 50% of us for three generations.



          • #6
            I just wanted to comment on getting HCM as a mutation. It is very rare. Two siblings getting the mutation without a parent having it would be on order of getting hit by lightning while being bitten by a shark and holding the winning lottery ticket.
            Statistically speaking, if Bert and his sister have it, then one of the parents has it, end of story.
            My doctor, Martin Maron of NEMC told me that 90% of HCM patients do not even know they have it. This means that their symptoms are either so light or non existent, that they don’t even bother to be checked out, or if they do get screened, nothing shows up.
            Also, HCM causing family tension is nothing new. If you research these boards you will find many family situations where people go into denial, never get tested, and refuse to talk about it. Its happened in my family, and its happened in Lisa’s family.


            • #7
              Thank you all for your advice. I suppose really all Bert and I can do is too give his family as much information aas we can the rest is up to them, Thank you all again