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    Author: mary (---.ckhnet.com)

    Date: 04-08-02 21:28

    My son was diagnosed with HCM at age 14 (8 months ago). He went for a routine sports physical and had a heart murmur. Thank goodness the MD ordered a echocardiogram which revealed concentric HCM at 18-20 mm that is obstructive. We were devastated. Our son was a good athlete and was told to quit all competitive sports. We went to a local teaching university clinic and our pediatric cardiologist said he only cared for a handful of patients with hcm. He placed him on atenolol and limited his activities. We decided to get a second opinion at the Mayo Clinic. We were very pleased with the care we received there. Our son now has an ICD in place. He seems to be doing well, his defibrillator has not "gone off" yet.

    My questions are the following:

    -Our physicians tell us that the condition is always genetic...this is the first case that we know of in the family. The doctor said my husband or I carry the gene and it may have just expressed itself for the first time. Any other info that you have recieved from your physicians?

    -Is there a blood test that can be taken to determine if anyone else in the family carries the gene? Fortunately the rest of the family have negative echos so far.

    -What is the quality of life? Our md says that our son can live a normal life span.

    -WHat is available in the midwest in the line of support groups especially for teens.

    -is diagnosis at a teen make the disease worse than diagnosis as an adult?


    [Re: questions]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-09-02 00:43

    Dear Mary,

    I'm so happy that you were able to catch your son's HCM. What a blessing --even though it is very hard to be a teen and not do the things you want to do.

    To answer your questions:

    Your doctor is right. The HCM clinic at the Mayo is one of the best. I've been there too (I saw Dr. Klarich) and they are on top of it. They have discovered that people can have the gene but it doesn't "express" itself. The percentage is low, but it happens. There are genetic tests now, too, for a few of the markers. The Mayo people should be able to hook you up with this.

    Once again, the doctor is right about having a normal life span. It is possible.

    Most of us are diagnosed in our teens, that is how this disease works since the heart grows as we grow. I was diagnosed at 13 and my brother at 8 (would have been later except after me, they checked us all).

    In terms of support, I don't know of any "live" groups in the midwest. The annual meeting in NJ on May 31 and June 1st will have a special teen meeting, so I encourage you to go to that. Also, if you join the HCMA, they are creating a network so that your teen could meet other teens in the area that have agreed to meet other HCM patients, too.

    I live in Chicago ---where are you? I realize a 33 year old female is probably not who a 14 year old boy wants to talk to, but I'm here if he does. Also, I can offer my 28 year old brother with HCM who lives in DC as an e-mail correspondent as well.

    The HCMA office has materials, resources, and a book by Dr. Barry Maron and Lisa Salberg about HCM that is very helpful. They can also give you info on the annual meeting. There is an e-mail link on this page.

    I hope I answered your questions. Please keep us posted on your son's progress.



    [Re: questions]

    Author: mary (---.ckhnet.com)

    Date: 04-09-02 12:37

    THankyou for your response. I have read the book by Lisa and Dr. Maron. It is a good resource.

    I have other questions after reading some of the posts on this website.

    WHat percent of hcm patients require a heart transplant?

    Why not implant a ICD in everyone...better to have it than have a sudden death?

    Should our parents and siblings be tested? My husband, other son and I all were tested but no-one else.



    [Re: questions]

    Author: Larry Sansone (---.nas4.saint-louis1.mo.us.da.qwest.net)

    Date: 04-09-02 14:05


    As another sufferer of HCM, I can assure you that your son can live a normal life. However, I would advise you to let him decide what he can and cannot do. I was diagnosed at the age of 22, on the brink of entering the St. Louis County Fire Academy, which was what I wanted to do for much of my life and I was good at. It was a psychological blow to me. I am now unable to do the things I have been trained to do for all of my post-high-school career. These things may trouble your son as well. I think it is important he be able to decide on his own what he is comfortable with doing. I am a big believer in quality of life, not quantity of life. There are times when he will not be honest when telling you how he is feeling. This is a subconscious act that I do to my loved ones as well, for reasons of not wanting to worry them; and also because I view this as a debilitating illness that I am embarrassed by. Your son may also feel this way since he was competitive in sports as I was. Tell him that he is welcome to contact me any time, as you are welcome also. I look at the positives, and I hope that you do too.

    Larry Sansone

    St. Louis, MO


    [Re: questions]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-10-02 02:42

    Dear Mary,

    EVERYONE in the family should be tested as HCM can be sometimes be carried but asymptomatic.

    In response to your question about giving every HCM patient an ICD...

    55% of HCM patients do not have any risk factors for sudden death and only 10-20% have enough risk factors to warrant an ICD. Personally, I would prefer to let my heart go on its own as long as possible.

    Which begs the question --what are those factors? The risk factors are a previous heart attack, ventricular tachycardia, family history of sudden death and an LVH of over 30mm. You need at least 2 factors to be considered for an ICD. (I'm quoting Dr. Maron's literature review published in JAMA 3/13/02).

    take care,



    [Re: questions]

    Author: lisa (208.47.172.---)

    Date: 04-10-02 14:43

    To further reply to your follow up question only about 2-3% of those with HCM require a heart transplant.

    NOTE: This is a post from the previous forum message board.

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