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mjesaitis Find out more about mjesaitis
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  • Great News!!!

    Yet again, I have to give Lisa big praises, hugs and kisses for being there for me. Because of her, I participated in the Cardiomyopathy study being done at Harvard.

    This week I received a letter from them stating that they found the gene and mutation that caused my HCM. I just couldn't believe it. I was sure I'd never hear from them again.

    So it's only about a year later and what it boils down to for me is that in the near future, we can send in blood samples of my brother, sister, and kids and verify for a fact if they also inherited this wonderful gene or not. My brother and sister are 46 and 47, and my kids are 14 and 17 and they haven't shown positive yet.

    What a relief it will be knowing for sure... I can't wait!

    Thank you all for your support. Matt

  • #2
    Re: Great News!!!

    I am glad you got results!

    The team at Harvard is wonderful.... BRAVO to them for finding the gene!


    Big hug back at ya.


    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)

    Comment


    • #3
      Re: Great News!!!

      Can anyone request this? I would love to find out why out of 5 siblings that I am the only one who has HOCM. I know my dad had it (although not officially diagnosed) but he had all the symptoms even to passing out and having mitral valve repair but HCM was mentioned. I'm the oldest of 5 siblings at age 52 and all of us have been tested ( echos) and I'm the only one with this wonderful disease so far. The youngest sibling is 42 yrs old so it would seem that it would show up in the others by now. Both my children ages 28 & 25 tested negative and both grandchildren 3 & 4 so far don't have it ( I know this can change, praying it won't). I just find it difficult to believe that I'm the only one that inherited this. Any thoughts and can I find out what gene caused this?

      Comment


      • #4
        Clinical Studies

        There seems to be quite a bit of interest right now in this type of study. I don't know if Harvard is still actively recruiting for their study, but i do know that the NHLBI is currently recruiting for the same study in Maryland. I'm trying to talk my sibs into participating in it with me.

        http://clinicaltrials.gov/ct/show/NCT00045825

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

        Comment


        • #5
          Re: Great News!!!

          Actually the NIH is not currently collecting samples. I was at the NIH last week and met with the director of cardiology, he advised me the website is not accurate. Harvard is still collecting samples and if you want to hear from them simply email me your name, address and phone number with a note that you wish me to forward your information to the lab at Harvard. They will then contact you.

          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)

          Comment


          • #6
            Re: Great News!!!

            Well that sucks... guess I won't be hearing from the NIH anytime soon in response to my letter
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #7
              Re: Great News!!!

              Jim,
              If you are interested in genetic testing we can contact the Harvard lab. Let me know if I can help.

              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)

              Comment


              • #8
                Re: Great News!!!

                Lisa,
                I was just wondering, Do you think that Dr Seidman could possibly have the samples that my family and I submitted 14-15 years ago? We never heard anything back and when I called to ask them they sent me out Vials for blood.

                Comment


                • #9
                  Re: Great News!!!

                  Hey Matt, Hmmmm ,the only 1 in 5 siblings ,wow what are the odds of that ,50/50 to pass the gene on Hmmmm ,have you maybe thiought about the Milkman or Postman . .Just kidding,I also am the only 1 of 5 that was "lucky"enough to receive the gene So hey ,we are special.So much for special allways being a god thing
                  Rich
                  Allways remember you cannot control the wind!!
                  However you can adjust your sails!!

                  Comment


                  • #10
                    Re: Great News!!!

                    Bryan,
                    I would suggest recontacting them and getting a new blood kit. The technology has changed so much that the old sample may not be the best they can work with.
                    Do you need the contact info?

                    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)

                    Comment


                    • #11
                      Re: Great News!!!

                      Rich,

                      I always suspected the postman or mailman theory because my brother and sister are just weird! But I'm actually the 1 in 3 because the other two I listed are my kids (hopefully, but then again hopefully not ).

                      I do consider myself special too because I am in the 2% of the population that get HCM, then in this group, I'm one of the ones who have HOCM, and also in this group, I am one of the very few who go to end-stage HCM. This all by my 40th birthday!!! My mom's so proud of me ...

                      But the reality is that I thank God and am truly grateful because I know it could have been worse, as many of you have lost loved ones due to sudden death. And one day I'm going to have a brand-spankin'-new-non-HCM heart.

                      Matt

                      Comment


                      • #12
                        Re: Great News!!!

                        Matt,
                        We may not talk often, but you should know that you are in my thoughts daily and my prayers for good health and a new heart are always with you.
                        Be well,
                        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)

                        Comment

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