If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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MADMAX Find out more about MADMAX
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  • #1

    my family

    Hi I just thought that I would introduce myself.I have 2 sons who both have hypertrophic cardiomyopathy. They are in there teens now.They were diagnosed about 3yrs ago. My eldest Had chest pains & the school doctor recomended that he should be checked out. Our local GP was very good & he was seen by a consultant within two weeks.
    It was our local GP who told us. It was a bomb shell to us. The consultant said he needed to check our other son. We had another bomb shell.
    What is more we knew nobody who had this condition.
    Since then we have found ,through the internet others who have the same condition.

    I have got togo now
    By
    drew
    Tags: None
  • #2
    hi

    Welcome!

    I'm glad you found us. I have a question and some suggestions.

    FIrst, you and your wife both need echos every 5 years ---HCM is genetic and while it is possible for the boys to get it without either one of you expressing it, it is pretty rare for that to be the case. Have you both been screened? Your siblings and any living parents (of yours and hers) should be screened, too.

    I highly recommend you call the office at 973-983-7429 and get on the mailing list as well as talk to LIsa bout specialists for you to take the boys too. The teens are a hard time as they may not want to take medication or want to overdo it or inadvertantly just overdo it.

    Most HCMers live a long, full life (to the average life expectancy) so please keep that in mind. It is a matter of getting the best medical care possible and following it.

    take care,

    S

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    • #3
      Welcome to the HCMA. I am sorry your sons have been diagnosed but glad you have found us. It is highly unusual for 2 children to have a "sporatic mutation" and therefore I would highly suspect that you will find someone in the family who also has the gene...although may not have expressed the condition.
      For more information on genetics and HCM please contact the office and we can discuss this futher.

      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

      • #4
        Drew, welcome to the board. You will find a call to Lisa at the HCMA office will give you more info than you ever imagined. The boys will find they are not alone in this when they are ready to read thru the board. Stories from our participants will give you great insight into what your sons are feeling/experiencing. Linda

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