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Lisa Salberg Find out more about Lisa Salberg
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  • ACC updates

    One day down two to go...
    Yesterday there were several posters presented on HCM to quickly highlight those of most importance to the daily lives of those with HCM I would have to say 2 posters were most important:
    The poster by M.Maron regarding the effects of gradients of more then 30mm drew a great deal of attention (info in this can be found on a seperate thread on this boardhttp://www.4hcm.org/phpBB2/viewtopic.php?t=1436 ). This brought up a great deal of discussion from several prominant surgeons in HCM - I suspect you will soon see a paper on the long term outcomes of pts post myectomy with an attempt to link improved survival rates to long term outcome. Many people are looking at this within the Ablation community... I look forward to a balancing of data to help pts and care providers have the most up to date data to make a treatment choice.
    Second was a poster by M. Ackerman (Mayo) re genetics: Prevalence and spectrum of a particular group of mutations... this data show that genetic information is not leading us to a clear picture of what we can expect from that form of the disease. Those with "bad" genes have good outcomes..and those with "good" genes can have bad outcomes...in other words it was clear that much more work is needed to find out the true meaning to genetic infromation in HCM.
    There were some other interesting posters but I suspect the 2 I have mentioned will have the greatest impact on future research and treatment in there respective areas of the disease.
    More later from Chicago!
    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)

  • #2
    glossary

    Hi,

    "Poster" is conference-ese for "short presentation" (as opposed to a full-fledged "session" that is a bigger, long presentation.

    Today is "HCM Day" (all of the HCM sessions are today). So I'm sure Lisa will be inundated with data.


    later,

    S

    ps all of us have sore feet!

    Comment


    • #3
      I don't see the info about the poster on a different thread. Where do I look? thanks, Kathy

      Comment


      • #4
        Lisa,

        Where would i find the notes presented by Dr. Maron on the effects of gradients over 30mm? I would love to review this if it is available.

        Thanks!

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

        Comment


        • #5
          not here

          Hi,

          Lisa is referring to presentations that have happened at the American College of Cardiology conference --not "posts" here.

          S

          Comment


          • #6
            Sarah, Lisa wrote this in the first paragraph or post on this page:

            >>The poster by M.Maron regarding the effects of gradients of more then 30mm drew a great deal of attention (info in this can be found on a seperate thread on this board). >>

            So we are looking for the separate thread on this for more info. I haven't seen it anywhere. Kathy

            Comment


            • #7
              I think Lisa is referring to an old thread about the article that M. Maron published on this subject a month or two ago. I think it is in this section of the board, and it was an article about obstruction.
              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.

              Comment


              • #8
                Cyn, I think I know what you are talking about. thanks. How is your baby? Kathy

                Comment


                • #9
                  no no no

                  Hi guys!

                  I am not wrong. Sorry, but true. Lisa is NOT referring to a "post" Dr. MM made to the board. She is talking about a presentation given at the American College of Cardiology Conference this weekend. These short presentations are called "posters" because they literally put up a giant poster and people gather around and the doctor with the poster talks about it.

                  You will not find this info on the message board.

                  Sorry my first explanation wasn't clear.

                  S

                  Comment


                  • #10
                    Sarah,

                    We realize that Dr. Maron did not "post" to this board, but Lisa's first post to this thread indicates that more details about Dr. Maron's presentation to the ACC can be found "on a seperate thread on this Board." Please reread her first post, especially the part in brackets.

                    Thank you for clarifying the term "posters"

                    Bob
                    Cleveland Myectomy Crew
                    Member since November 2002

                    \"Chance favors the prepared mind!\"

                    Comment


                    • #11
                      Re: ACC updates

                      Originally posted by Lisa Salberg
                      The poster by M.Maron regarding the effects of gradients of more then 30mm drew a great deal of attention (info in this can be found on a seperate thread on this board). This brought up a great deal of discussion from several prominant surgeons in HCM - I suspect you will soon see a paper on the long term outcomes of pts post myectomy with an attempt to link improved survival rates to long term outcome. Many people are looking at this within the Ablation community... I look forward to a balancing of data to help pts and care providers have the most up to date data to make a treatment choice.
                      Dr. Maron's information that Lisa refers to above can be found on this message board HERE: Effect of Left Ventricular Outflow Tract Obstruction on Clinical Outcome in Hypertrophic Cardiomyopathy
                      Thanks, Tim
                      Forum Administrator

                      Comment


                      • #12
                        phooey

                        this is what I get for posting when I'm half asleep.

                        thanks.

                        S

                        Comment


                        • #13
                          and that post that Tim mentions is the one that Cynaburst referred me to. I understood! Thanks for clearing it up again. Now I am sure we all understand. Kathy

                          Comment


                          • #14
                            Thanks for the link to the article, although now i kinda wish i hadn't read it. I'm 40 years old, my gradient at rest is 100mm, the meds are kicking my butt, and this probably wasn't the best time for me to read the darn thing
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #15
                              Yes, it is discouraging. It makes me nervous also. And the sad thing is, we don't even know that if we have surgery or ablation whether it prolongs your life or not. You would think they would have included that in their studies. After reading it, I am seriously considering alcohol ablation to hope it extends my life.

                              Comment

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