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SADS Conference in Atlanta

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  • SADS Conference in Atlanta

    Well, I'm a bit behind on this, but I did want to post something about the SADS Foundation meeting held in Atlanta on October 24-25. SADS (Sudden Arrhythmia Death Syndromes) is an organization that advocates research and education for diseases that cause sudden death in children and young adults. It encompasses HCM but definitely focuses on Long QT syndrome. Nonetheless, I enjoyed and certainly learned from the sessions I attended. I have to admit the best part was seeing Lisa again and being able to spend some quality time with her! Lisa gave her benefits and patients' rights talk in a couple of break out sessions and they seemed a sure hit with the attendees.

    Of the limited information that was given on HCM, I found of personal interest Dr. Robert Campbell's remarks. Campbell is head of Atlanta's Sibley Heart Center, part of Children's Healthcare of Atlanta and our 14 year old daughter, Caitlyn, is a patient at Sibley. Campbell's talk was mainly an overview of how the heart works but at the very end he included a few slides of this newer process for using MRIs to assess heart muscle function and blood flow. The very short movie on his presentation showed a 4D viewing of the heart which, at least to this untrained eye, looked impressive (maybe it was all the pretty colors!). I assume this is the same procedure I read about in an article posted here last summer on 'late-enhancement MRI'. Caitlyn's PC had just ordered one of these, now scheduled for this Wednesday. This was based on the recent elevation of her gradient numbers (4 weeks ago: resting 101; 2 weeks ago: 60). She's currently on 300mg of Verelan PM daily and until last month had been stable for about a year.

    Back to the conference: there was a general but well done break-out on cardiomyopathies by local PC, Patrick Frias. He mentioned a newer beta-blocker, carbetavol (sp?); I was wondering if anyone has any experience or more information on it.

    It was an interesting conference, essential really since it was in my backyard, but much more dealing with Long QT (which in honesty was quite fascinating). I just wish they'd come up with a new name for their group- it's kinda depressing as it is!

    Again, sorry for the delay in getting this up and posted. At least I got it done before Lisa heads to her next conference, in Orlando!

    Paul (and Elizabeth) Murphy

  • #2
    Re: SADS Conference in Atlanta

    It was great to see you both! The meeting was interesting and it was nice to see so many people LIVING well with various heart conditions.
    I thank the staff of SADS for inviting me, it was a pleasure to speak to these great people.
    Thank you for the ride from the airport, the wonderful evening and for making me feel so welcomed in Georgia!
    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)

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    • #3
      Re: SADS Conference in Atlanta

      Sorry that I was unable to make this conference.
      Sorry that I'm being a little selfish.
      I live just outside of Atlanta. I now believe that my cardioligist is not experienced enough to advise me on what could turn out to be some tough decisions.
      Since I found this website, I have formed an opinion that I would need to find a local cardiologist with thorough HCM experience no matter what direction I go in.
      Therefore, I was very interested in this post mentioning some local people.
      I realize that the first doctor you mentioned was a childrens specialist.
      Lisa, did you meet any local cardilogists durng your time here, that you believe may be helpful?
      Fx

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      • #4
        Re: SADS Conference in Atlanta

        As for local cardiologists familiar with HCM in the Atlanta area, I can recommend Dr. XXXX, head of cardiology at Piedmont Hospital. After Caitlyn was diagnosed a couple of years ago XXXX did our screenings and he seemed quite knowledgeable about HCM and has had a number of patients with it. Interestingly, his brother, Barry, is head of cardiology at St. Joseph's Hospital on the northside of Atlanta.

        Paul

        Paul, I edited your post. We don't like to give out specific doctor information on the public board. Felix can call Lisa for more doctor information or you can PM Felix with your opinion on a certain doctor. I'm not trying to be rude, but this is just out policy. Words in bold are the only ones I changed. Thanks. Reenie

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