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    Hello I am just wondering what type of research is currently being done to cure HCM?? There must be other diseases that are based on genetic DNA that are in research? Does anyone know of any HCM cure research or other diseases where Genes are being treated or manipulated?


    Theo
    26 years old, diagnosed April 2005. ICD July 2005.

  • #2
    Dr. Christine Seidman in Boston is doing genetic studies to determine if there are links between certain mutations and sudden death.

    We are a long, long, long way from a cure since we are still finding genentic markers and we don't have a standard genetic test. There are hundreds of mutations that can cause HCM, so it is unlikely we are going to see anything like the Fabrey's disease cure.

    S

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    • #3
      The way the doctors talk, I think we are part of the study to learn more.
      Cleveland Myectomy Club
      August 31, 2004

      Comment


      • #4
        Over here in Phoenix, as far as the doctors know, I am an Enigma.
        49 yrs. old
        Diagnosed at 31.
        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
        My brother passed away suddenly at 34 yrs old from HCM.
        2 teenage children, ages 17 and 15.

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        • #5
          Thanks for the feedback ladies and gentlemen.

          I'm going to take the position that there is hope at finding a cure.
          If any of you know of anyone doing research on this mater I'd like to hear about it.

          My naturopathic doctor who is very well known and talented has taken a recent interest in HCM. He has been able to cure Hep C in the past. He feels that there may be a way to locate and correct / alter the mutated gene / proteins which has been done before in other diseases. HCM is different but we can only try.

          Let me know where we can get more good information.

          Thanks

          Theo
          26 years old, diagnosed April 2005. ICD July 2005.

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          • #6
            Since the cure isn't expected in the coming years, there are some new genetic research aiming to develop interventions to attenuate and/or revert the clinical manifestations (phenotype) considering that all the treatment options available are restricted to symptom relief. But due to HCM variability, there is also a long way to it.

            William.

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            • #7
              Originally posted by William
              Since the cure isn't expected in the coming years,

              William.
              I am wondering William if you could please tell me who is not expecting the cure in the coming years and when it will be expected since you are sure that it cannot be expected anytime soon.

              I am interested in finding out who is doing research on a cure as myself and some others may be able to help with some funding.

              Maybe if some more people expect and work on the cure then maybe we can expect it sooner!

              What do you think?



              Thanks

              Theo
              26 years old, diagnosed April 2005. ICD July 2005.

              Comment


              • #8
                Hello Theo,

                I am not sure that cure isn't expected soon. If you check the HCMA Web Site, you will find the text "it is not likely that there will be an outright cure within the next 20 years".

                The Baylor College in Texas is working currently with transgenic HCM animal models and there are promising initial results like fibrosis and hypertrophy reducing. Obviously, tests in human may or not reproduce the same results. But regarding a cure, since there are over 200 recognized gene mutations and doctors still don't even know how they interact in the disease's clinical manifestation, it's expected (Baylor is a example) that better understanding about the different gene mutations and their effect in patients will occurs before an available cure. As you may know, in order to get more people genetically screened, the technology used in the process need to evolve to reduce its cost (currently over US$4500). So if you consider the time to each step, it's concluded that there will not be a cure soon.

                But I am sure that all people here hope that things change faster than we expect.

                PS.: If you want copy of latest article published by Baylor College about current results in HCM research, please send me your e-mail by PM

                William.

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                • #9
                  Hey William can i get a copy of that ? Whilst we all hope and pray for a cure obviously this disease is very complicated and a cure might be some time off. I seem to be stuck on this whole Myocardial dissaray issue. Do all people with HCM have myocardial dissaray from birth ? Or does it mutate during your life ? I guess i'm trying to work out if you have no symptoms at all but carry the gene does this mean you have myocardial dissaray ? even if you have a normal sized septum?.

                  I Guess we would all like a lot more answers to our questions and would like to know more about general research. Who are the leading research centres, what are they working on when will they have some answers to our questions. I know i would feel a lot better knowing that there are lots of research projects on the go. We can't find a cure if no one is working on one.

                  One of our problems seems to be how much of a specialists field this is, seems a lot of cardiologists need to be educated so they can help in getting better results.

                  Anyway sorry about my ranting but lets face it research is our biggest hope and it's hard to tell what's being done.
                  \"There is no GENE for the human spirit\"

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                  • #10
                    I've just requested your e-mail by PM.

                    William.

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                    • #11
                      Thanks for the info William.

                      Do we know which is the leading research center for HCM?


                      Theo
                      26 years old, diagnosed April 2005. ICD July 2005.

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