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GAR5785 Find out more about GAR5785
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  • Hi...

    Hi...

    My name is Greg, Im an 18 year old college student...my family story with HCM is unfortunately a sad one...

    In January 1992 my brother Scott died of HCM at the age of 11, I was 6 at the time...we didn't know he had it, unfortunately the first symptom in his case was sudden death while doing laps in gym class...right away my parents and I got EKG's and ECHO's to make sure we didnt have it, and a few years later we went to visit Dr. Fananapazir at NIH and my parents consulted with him (I was present but was only 8 or 9 at the time, I dont really remember what he said)...

    Needless to say, whenever Im doing something physically strenuous, this is foremost in my mind, and even though I've been tested several times since then with negative being the results...its been tough...

    1. I have a few questions...when I was very little, I had a slight murmur that disappeared as I got older...I'm still not convinced that I dont have it (probably mostly for psychological reasons)...are my odds for developing it in the future any greater because of my family's past history with it???

    2. Is sudden death often the first symptom, or was my brother's death an exception to the rule???

    Thanks,
    Greg

  • #2
    Re: Hi...

    Greg......I'm sorry to hear of your brother Scott. I am a 38 year old female and was diagnosed just 3 months ago with severs HOCM. My daughter who is 19 was also tested and so far she had a good report. No interpretable results for HOCM. We are both very happy because beyond the obvious she is very physical and is trying to obtain a degree in Outdoor Educational Activities. If her diagnosis was different it would have changed her whole plan for the future.

    Unfortunately I can not answer your questions because I was adopted and have no family history. All I know is that if you have this disorder in your family that you have to be tested annually to make sure that you don't develop this disorder.

    I wish you the best and again I am sorry that your brother didn't make it thorugh it.

    Kathy

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    • #3
      Re: Hi...

      Greg, I am very sorry to hear about your brother. My recommendation to you would be to call the HCMA office next Tuesday or Thursday and speak with Lisa Salberg. She will be able to answer all of your questions and give you some suggestions on where you should go from here. Our office number is 973-983-7429 and she is in the office from 9 a.m. to 5 p.m. Eastern time. If these times are not good for you because of your class schedule, call the office and I can help you arrange a convenient time for you and Lisa to talk.

      Kelly
      Life is 10% what happens to you and 90% what you do with what happens to you.

      Comment


      • #4
        Re: Hi...

        Hi Greg, Sudden death is fairly rare even for people with HCM.
        Since you've tested negative several times I would think your chances of Sudden death are pretty remote.
        Also even though your brother had it and probably one of your parents, you had a 50% chance of having it and judging by your past tests your part of the lucky 50%.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.
        Glen

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        • #5
          Re: Hi...

          Dear Greg,

          I'm very sorry about your brother.

          Please read the rest of this site (not just the board, but the site) as it explains HCM, what it is and the symtpoms, etc.

          Regarding your specific questions: I had a murmur that went away, too. A murmur just means that your blood is making some noise at it goes through the heart. Since you have grown, it isn't unreasonable to believe your murmur is gone.

          However, a murmur can be caused by many, many things and doesn't indicate if you have HCM or not. Since you have HCM in the family, you MUST get an echo every two years to make sure it hasn't developed. While most cases develop in childhood, there is a small chance that it could show up later.

          -edit -

          You don't mention your parents. Did they both test clear? Do you have other siblings? Your parents should get echos every 5 years if they were clear before.

          There are some great specialists on the east coast, so take a look at the links page for more info there, too.

          In general, it is sprinting type stuff that is the most dangerous for you. Bastketball, baseball, running, weight lifting, anything that has short bursts of energy are the big problems. I would try and keep to more even-keel type stuff.

          take care,

          s

          Comment


          • #6
            Re: Hi...

            Greg

            Sarah is right, get checked every 2 years, get as much family history on sudden cardiac deaths, i lost a brother also to this, back then they called it IHSS, now his daughter has it, don't let this stop you from living life. life is too important, get your checkups like you are suposed to, and you should be fine, But call Lisa she is very good at what she does, she may give you peace of mind, and i to am sorry to hear about your brother
            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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            • #7
              Re: Hi...

              Hi,

              Thanks for the replies...to answer a few questions...neither of my parents have it, and as far as I know my brother was the first occurrence of any type of sudden cardiac death in the family...also, I have no other siblings...

              Greg

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              • #8
                Re: Hi...

                Greg,
                We have learned so much more about HCM over the years. It is likley that one of your parents has the gene and has not yet expressed the gene. It is well advised that you have a screening every 1 year or so until the age of 25, then every 5 years thoughout your life.
                Unless, you are able to find the gene in your family that causes HCM. If you are able to do a genetic test, you can then rule in or out the need to continue to screen yourself.

                I am sorry to hear of the loss of your brother, I know all too well the pain of loss due to HCM. I hope you and your family are well and please know if there is anything we can help you with just let us know.

                Best wishes
                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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