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Having older siblings screened for HCM

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angusjcampbell Retired from Healthcare Telecomm in NY City in 2004. Diagnosed with HCM in 2005, moved to Golden Isles region of SE Georgia in 2006. Now working for a non-profit ministry called International Seafarers Center at the busy seaport in Brunswick . Find out more about angusjcampbell
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  • Having older siblings screened for HCM

    I just got my HMC ticket and will begin treatment shortly. Both my regular cardiologist and my HCM specialist say that I should tell my brother and sister to get screened, and I understand why that is normal.

    But what I forgot to ask (and will, but am curious to ask here) is that since my brother and sister are ten and nine years older respectively and I am 45, wouldn't they have already known if they had it? When my sister was in her thirties, the age I was beginning to be symptomatic, she was running NYC marathons and is still active with swimming. My brother routinely day hikes in mountains in New England and the West to this day.

    We have no history of sudden death in the family. but we all have high BP.
    Still worth insisting they get screened?
    Thanks
    Angus Campbell
    Golden Isles Region, Southeast Georgia, USA

    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
    Myectomy Jan 9th 2014 at Cleveland Clinic
    Drs Lever and Smedira

  • #2
    Yep, it's still worth insisting they get screened. We have at least one member here who was screened every 5 years or so due to family history and wasn't diagnosed until over age 50. We also have a lot of people here who were 50+ when diagnosed. They had been having symptoms for years, most of them, but thought they were out of shape, told they had anxiety or asthma, or either had no clue at all they had a problem until a doctor heard a murmur that was new to them. Keep up the good work on learning about HCM. You have a lot of questions, and we're here for you.

    Reenie
    Reenie

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

    Comment


    • #3
      YES you should have them all screened. Just because they have been active does not take away from the chance that they HCM.

      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)

      Comment


      • #4
        Please tell them it can come out at any age HCM that is

        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Older siblings

          Thank you Reenie, Lisa and Shirley

          The phone calls have been made and you can bet that this got their attention!

          What method should they expect to be told should be used to screen them?

          My diagnosis came in a round-about fashion, but these guys will have the benefit of knowing exactly what they are looking for. I expect the possibility that their GP's may not know and insisted they see a cardiologist in this case. So what are the signs that a practitioner knows their stuff for screening for HCM?

          Thanks again for your help.
          Angus Campbell
          Golden Isles Region, Southeast Georgia, USA

          Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
          Myectomy Jan 9th 2014 at Cleveland Clinic
          Drs Lever and Smedira

          Comment


          • #6
            http://www.4hcm.org/WCMS/index.php?screening

            Here is all you need to know!

            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


            • #7
              Best of luck to your siblings. I sincerely hope they don't have HCM. However, if they do, you now have a direction to go and a good place for information.

              Reenie
              Reenie

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

              Comment

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