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Beary Find out more about Beary
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  • Running

    Are there any people here who are genotype positive but phenotype negative and run? I have the gene but no echocardiograph evidence of HCM. I'm in my early 30s and like to run. I'm meeting with my Cardiologist soon but I don't see a need to stop running if my heart doesn't have damage yet. What are other people's experience?

  • #2
    My understanding is that some genotype positives never progress to a disease state....also running with appropriate warm up and cool down is not forbidden in HCM as far as I know. Just get regular cardiology check ups with EKG and echo cardiogram and notice any changes in excercise tolerance, sob, palpitations chest pain etc. Should they arise. Don't focus on " damage yet" since it may not occur. Screening for family history of sudden cardiac arrest is important ..... I hope you get screened by an HCM specialist......not all cardiologists are familiar with HCM and it's screening protocols
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      I was a competitive runner for 39 years before the mutation expressed itself when I was in my middle 50's.

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      • #4
        Hi, everyone! Been reading this topic and would like to clarify. Basically, people with HCM are allowed to run since it has no effect on their condition?

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        • #5
          I recommend getting with a HCMA COE for an opinion on your specific condition.
          I am 58 years old with HCM but no known gene mutation. I have an ICD.
          My condition expressed itself after an automobile accident and a DVT and PE.

          I participate in aerobic activities on a regular basis like high level slalom waterskiing and ice hockey. I am also involved in exercise studies and where a Fitbit to track my steps.

          The point is not to brag but rather to offer encouragement to active people who are just learning about their condition. Live your life free from fear with the advice of a cardiologist who truly understands HCM. Having said that, I must say that there is still a lot to learn about the disease. Things are changing about the recommendations for exercise for people with HCM. It is not as restrictive as it used to be.

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          • #6
            Originally posted by mhochkins View Post
            Live your life free from fear with the advice of a cardiologist who truly understands HCM. Having said that, I must say that there is still a lot to learn about the disease. Things are changing about the recommendations for exercise for people with HCM. It is not as restrictive as it used to be.
            Thank you very much, mhochkins! That cleared a lot of things. Such an inspiring statement as well.

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            • #7
              It is sincerely my pleasure!
              The exercise study I am in is appropriately named "LIVE HCM" and that is exactly what I intend to do for the rest of my life! :>)

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