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family testing


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  • family testing

    i am new to this board but i have a question regarding having my children (ages 10 & 8) tested. my nephew passed away suddenly few weeks ago due to undiagnosed ihss. my children are athletic both basketball and swimming. should i have them tested now or wait until they are older? I so how often should they be tested and which test is recommended?


  • #2
    Test them now. Follow up screenings should be done at age 12 annually until age 20 then every 5 years.

    I am very sorry to hear of your loss. If there is anything we can do for your family, please let us know.

    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
      They should be screened with both an echocardiogram and an EKG each time you have them screened.

      I'm really sorry that you lost someone so close to you. My thoughts and prayers are with your family.


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


      • #4
        Hi Joed
        I am so sorry to hear about your loss.

        I agree with Lisa and Reenie. Early detection is best.

        Please keep in touch.

        Take care


        • #5
          I agree get them tested, i hope everything turns out good for them, i have a son with it along with myself, and i had my son have his kids tested too and they are 10 and 4, welcome to our little community and please keep in touch

          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


          • #6

            I'm so sorry to hear of the loss of your nephew. Please follow Lisa's advice and have your own children tested. The usual tests are an EKG and echocardiogram, as well as a thorough physical examination and family history. Feel free to post any questions or concerns you might have regarding HCM... we're all here to help.

            Take care,

            "Some days you're the dog... some days you're the hydrant."


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