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Darren Find out more about Darren
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  • Advice Please

    I hadn't heard of Hypotropic cardiomyopathy until my uncle was diagnosed with it last year, I have heard it is hereditary, can anyone confirm this and is there any action I should take now to get myself checked out.

    Should I go and tell my GP what my uncle was diagnosed with and ask for some tests or as I have no symptoms as far as I know should I not worry about it.

    Please advise,

    Thanks,
    Darren

  • #2
    Re: Advice Please

    Hello Darren,

    I'm glad that you found this website to help answer your questions. I had never heard of HCM until I was diagnosed with last year myself so I knew nothing about it either at the time of diagnosis.

    Hyperthrophic Cardiomyopathy is a genetic disease and so yes it typically is inherited from one generation to the next if it carries through however, like in my case, there are no others diagnosed with it in my family.

    To get yourself checked out you need just to get an echocardiogram performed. It is very important that if your uncle has siblings and/or children that they be checked out as well. A parent with HCM has a 50% chance of passing on the gene to his/her children.

    If you haven't already you can check out the general info on HCM and encourage your uncle to do the same on the website. (Just click on the big 'heart' in the upper left hand corner and from there explore the links for symptoms/diagnosis/treatment, etc.) Of course, post as much as you like to the message board, there are so many great resources here to help answer questions; everyone will try to help as much as they can!

    I hope this is helpful, I know others will chime in as well to help you out - I was just up earlier than usual this morning and saw your posting!
    All the best,
    Lynn
    Lynn Stewart
    HOCM 4/2002
    Cleveland Myectomy Crew 8/2002

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    • #3
      Re: Advice Please

      Lynn has given a great reply to this question!
      If you need anything further please call the office.

      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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      • #4
        Re: Advice Please

        Darren, Welcome to the message board. Lynn has given you great advice in her suggestion to review the info on the website. It will help you to prepare a list of questions and concerns to take to your doctor. She has given you very good basic info on HCM and it would be good to discuss this with your family doctor. It sounds like you may be doing the research for your family(including cousins, aunts, uncles), and will be able to help them with moving forward to family screening if they have not done so. There is a tremendous amount of info on the message board. Take your time as you read thru and ask questions. You will be amazed at how helpful the members/participants will be. Linda

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