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Can we condense some info?


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Debbie Find out more about Debbie
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  • Can we condense some info?

    Hi guys,

    Don't mean to repeat, repeat, repeat, repeat...

    Anyway, here is the situation. I am the second person in my family to be diagnosed with HCM, after my Mom. I have two sisters, and they each have 2 children.

    We are pretty sure my Grandmother on my mother's side had HCM, as she had untold heart problems, and eventually died of cardiac arrest.

    I haven't been able to find the post about how asthma can be mistaken for HCM. My 8 year old nephew has asthma, and I am quite concerned about him.

    Can you help me to get the info about how often my siblings and their children should be screened for HCM, and also how HCM can be mistaken for other issues, into one post?

    That way, I can refer them to the HCMA, and they can read up on it themselves.

    I would appreciate the help, and again, I know it is a repeat. Sorry to be a pain. If there is a post w/ all the info., maybe it could just be copied here?

    Thanks for the help, guys.


  • #2
    Re: Can we condense some info?

    If you use the search function on this message board, you can search "screening" and find lots of answers. You could also search "asthma" to find the answers to your questions.

    I believe that the answer to the screening is every year from adolescence to adulthood, and every five years thereafter.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


    • #3
      Re: Can we condense some info?

      Hi Debbie,
      Cynaburst has the general answer when it comes to screening. That is, annually through adolescence, and once every five years thereafter – if all tests and indications remain clear. With symptoms, I’ve heard of infants being screened from prior to birth on. If there is a suggestion of a problem, or if the student plans on engaging in heavy exertion sports, it would be a good idea to be screened prior to such activity / school year – especially if there is a family history of people dying suddenly from heart failure before they turned fifty, or there are one or more of the other warning signs present.

      As far as being diagnosed with asthma, that unfortunately is a fairly common occurrence, along with diagnoses of panic attacks, anxiety, depression, insanity, and a bunch of other maladies. Once HCM has been diagnosed in the family, screenings (Echo’s and EKG’s) should be preformed by an HCM specialist.

      HCM appears in an average of one in five hundred people. This therefore is a very small corner of a cardiologists practice, and consequently it is advisable to seek out a cardiologist that is totally conversant in this malady. I’m sure Lisa can help you find someone in your area that would be of help to you.


      • #4
        Re: Can we condense some info?

        I am working on just such a thing.... hopefully by the end of the month you will have it!
        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)


        • #5
          Re: Can we condense some info?

          If I am no mistaken isn't that info clearly in the book you and Dr. Maron wrote Lisa?
          Personally I believe that anyone who does not have a copy should and they then can highlight those areas as well as have the back-up info from this site. It is the greatest reference and i can not state enough how valuable it has been to me when answering just those questions clearly to those who want to know.
          Otherwise yes, the search button will bring up lots of related info , but until the near future it requires some searching.
          My Best .
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin