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Damian G. Find out more about Damian G.
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  • New Member's Hello!

    Hello everyone, I have just signed up and would like to share my experiences. In June this year, my father died suddenly at the age of 56, this was a complete shock for me and all of my family, we never would have thought he would die this way. He was hard working family man who took care of himself and would pay attention to his health by swimming regulalrly 3 times a week and watching his diet.
    I have discovered since that my father died of HCM, a condition I had never heard of and have decided to find out what it is and what effect it has on the rest of our family. I have found a great deal of information on the internet and on this website which has been invaluable source of knowledge.
    I know my grandmother also died suddenly a number of years ago due what we believed to be an 'enlarged' heart, I think this probably means HCOM, and my guess is that my father inherited the condition from his mother. I also know that my aunt has had a pacemeaker fitted in the last couple of years and to the best of my knowledge she is aware of cardiomyopathy. It has been recommended that we are all screened for this condition but I am not sure at the minute what to do?
    I know my father was screened after my gran died, and in the last few years, but they never detected it because he also had a back condition that made the ECG difficult to carry out... I guess I am trying to find answers and work out the best way forward. Any help would be greatly appreciated and I would be happy to answer any questions.
    Damian
    Sláinte chugat (Good health to you)!!

  • #2
    Re: New Member's Hello!

    Hello Damien, welcome. Sorry for your loss, I can relate to that.
    I also lost both my father at 43 and I never knew his mother, my grandmother because she passed even before I was born both from suspected HCM.
    My advice to you even though you may feel OK is go for the screening, you'll eliminate the doubt and feel better knowing one way or the other.
    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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    • #3
      Re: New Member's Hello!

      Damian, Glen is right. You should still be screened. HCM is a genetically dominate trait, so there is a 50/50 chance that you inherited it from your dad. I'm sorry for the loss of your family members when they were so young. If you do indeed have HCM, with proper treatment you can live to normal age or more. Good luck to you and let us know if there is any way that we can help you.

      Oh, and you might consider giving Lisa a call at 973-983-7429. She knows of doctors all over the world who specialize in HCM. There is even an HCM organization in the UK, www.cardiomyopathy.org.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: New Member's Hello!

        Be sure to stock up on health and life insurance NOW ---before you get screened. Otherwise, you won't be able to get any.

        And then follow Reenie's advice.

        take care and I'm sorry for your loss.

        S

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        • #5
          Re: New Member's Hello!

          GET SCREENED ASAP. You are at risk of having HCM and you should be screened along with all your siblings. If you have children they too should be screened when old enough.
          The Cardiomyopathy Association in the UK can help you find a doctor in your area to assist you.
          I am sorry to hear of the loss of your father and grandmother. I do like to look at things from a slightly different position...they gave you a gift, that gift is the knowledge of HCM. Use this gift to care for yourself and your family.

          Peace,
          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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          • #6
            Re: New Member's Hello!

            Thanks everyone, I appreciate the things you have said. I am organising at the minute to get screened, a specialist in London who was involved in my dad's post-mortem has said that he would welcome all our family for screening, we just have to referred by our doctors. I don't think my brother or sisters actually realise what happened to my father, it may be a bit soon yet, my sister has already said she doesn't want to be screened but I don't think she really knows what HCM is and the genetic link. I know I have an obligation to tell them, but what effect would it have at the minute I am not sure. I will keep you informed of the screening. Thanks again.
            Damian
            Sláinte chugat (Good health to you)!!

            Comment


            • #7
              Re: New Member's Hello!

              The Cardiomyopathy group in England is great and they (and us) can help you tell your sisters. You can request information, buy our book, etc, so that you can give them something to read and digest, too.

              good luck,

              s

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              • #8
                Re: New Member's Hello!

                Good luck with your screening and with helping your family understand HCM. It is not always easy to be the one to "break the news" but you are doing an amazing thing to help protect your family.
                Best wishes and call on us if you need 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

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