Hypertrophic Cardiomyopathy Association

I got a kind email yesterday from Lisa Salberg, the Executive Director of the Hypertrophic Cardiomyopathy Association (HCMA) and thought I’d share some information here at the blog.

I actually met Lisa a couple years ago at a medical conference here in Jackson that was devoted to the topic of sudden death in athletes. My interest in the various issues regarding athletes and heart disease was actually stimulated by that conference.

The HCMA is a non-profit organization that is devoted to providing information and advocacy for patients with hypertrophic cardiomyopathy (HCM), their families, and their physicians. Their website, www.4hcm.org, is a great source of easy-to-read, practical information about HCM and would be a valuable resource for both athletes and non-athletes. Please take a moment to visit their website.

I’ll add a link to HCMA in my list of resources.

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Comments

  1. says

    My daughter has just been diagnosed with the HCM gene, but at this time does not show any symptoms. ECO was great, stress test and holster all good. The recomendation is that she not do competitive sports?? Why if the heart is healthy and there are no symptoms are they making this type of a recommendation??
    Thanks,
    K

  2. says

    Kelli,

    Thanks for your comment.

    Your daughter’s physicians will be in the best possible position to offer advice about participation in sports.

    That said, the most recent consensus report from doctors who specialize in this area (the 36th Bethesda Conference) advised that gene carriers who had yet to manifest clinical evidence of HCM (and who had no family history of sudden death) could be allowed to continue to participate in their sports.

    You might want to have additional discussions with your daughter’s doctors.

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