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Hi - recently suffered a loss from HCMA

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  • Hi - recently suffered a loss from HCMA

    Hi everyone.

    On August 4th this year, my brother-in-law Paul died suddenly from HCMA. He was just 27 years old.

    He and my sister had been together for almost ten years and have a wonderful three year old daughter named Jessica. They had been married only six weeks when he died.

    Paul was undiagnosed, so it was a huge shock to us all. I am still so hurt and angry, but am also trying to be philosophical about it. I try to console myself with the fact he felt no pain and that it was over very quickly, as do the rest of my family.

    I was just surfing to try and find out more about the condition for two reasons. The first reason was just to understand and learn about HCMA. I feel like it helps to have knowledge of the subject because it has made such an impact on my life.

    Secondly (and the main reason) is that I am worried about my niece, and the possibility she may have inherited HCMA from Paul. I have read many of your posts, and it brings me some sort of relief to know how brave you all are, and that it has not stopped you enjoying your lives.

    I know that Paul's sister, Alex, has been cleared following tests. Both of his parents survived him, but I am unaware of any testing or diagnosis that may have occurred recently.

    Does anybody have any advice?

    Many thanks

    Simon
    Love every second

  • #2
    Re: Hi - recently suffered a loss from HCMA

    Welcome, Simon. Your niece should be tested when she gets a little older. HCM is a genetically dominant trait. Paul's sister Alex should also be tested routinely, depending on her age. If she is still clear through the early 20's, she can have an echo to screen for HCM every 5 years or so. It would be unlikely that she develop HCM at that point, but not impossible. Please look up www.cardiomyopathy.org. That is the UK's site on HCM and they will be able to help your extended family find doctors who are knowledgeable about HCM. We're here for any other questions you may have.

    Reenie
    Reenie

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

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    • #3
      Re: Hi - recently suffered a loss from HCMA

      Simon, Welcome. I'm very sorry for the loss your family has suffered. Your niece, sister, and the rest of the family are fortunate to have someone so caring and concerned. Thank you for making such an effort to learn and help them sort through the difficult information. It's an overwelming situation that they may not yet be able to tackle. Take care and best wishes, Linda

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      • #4
        Re: Hi - recently suffered a loss from HCMA

        We are all sorry for your loss, it is never easy to understand and will take time to process all you are going through. I can tell you this, we will be here for you when and if you need us. This is a wonderful place to help understand the disease. The link above to the UK association may be useful, but that does not mean you are not welcomed here!

        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)

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