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  • The New York Times

    [The New York Times]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-15-02 20:56

    I have been told that the article the New York Times was working on during the annual meeting is set to be published on July 16, 2002. So check NYT.com and look it up in the science/health section.

    I always get nervous about these things, because you never know who they are going to come out.

    So lets hope it is a good article that helps raise awareness of HCM!

    Lisa

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    [Re: The New York Times]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 07-16-02 00:47

    Lisa,

    Here is the article. Not a bad novice explanation.

    Jerry

    July 16, 2002

    A Silent Killer Strikes the Hearts of the Young

    By JESSICA KOVLER

    t was the morning of March 29 - Good Friday, Michael Kress remembers - when he entered the bedroom of his 14-year-old son, Timmy, to wake him for school.

    Mr. Kress found Timmy on the floor. He yelled for his wife to dial 911, and he tried cardiopulmonary resuscitation. But Timmy had been dead for several hours.

    Mr. Kress later learned that Timmy had a rare heart disease called hypertrophic cardiomyopathy, which often attacks without warning. In Timmy's case, it could have been detected and his death prevented, but the screening is expensive and is rarely recommended routinely by doctors.

    In hypertrophic cardiomyopathy the growth of the heart muscle is excessive and sometimes blocks the flow of blood to the aorta artery.

    The disorder, which is rarely detected early, is the most common cause of disease-related sudden death among young people. More than half of those with the disorder are genetically predisposed to it. Athletes in top physical condition are often among the victims.

    "We wish we would have known sooner," Mr. Kress said. "If Timmy underwent some form of screening he might still be with us."

    The disorder afflicts one in 500 people, though not always with fatal results.

    A recent study by the University of California at San Francisco found that roughly half of the cases may be at least partly attributed to a mutation that disrupts at least two genes and interferes with the heartbeat.

    Since Timmy's death, his four brothers have been tested for the disorder. Two do not have it; two are awaiting further testing.

    The relevant genes contain the code for proteins that interact with the heart muscle. The mutations cause the muscle to grow excessively, thickening the heart and causing arrhythmia, which can lead to sudden death.

    People with the the disorder fall into three categories: those with mild symptoms, those susceptible to episodic heart failure and those at high risk of sudden death.

    A majority of these cases occur in otherwise healthy teenagers, often athletes, and researchers remain largely at a loss for an explanation for cases other than those associated with the genetic mutation.

    "This disease comes totally out of left field," said Dr. Vinay Nadkarni, the chairman of the emergency cardiovascular committee of the American Heart Association.

    Most people, but especially children, do not come to a doctor and demonstrate symptoms, Dr. Nadkarni said. "They collapse on the baseball diamond and die, and that's the end of it," he said.

    Many doctors say exercise can strain the heart, aggravating the disorder, and actually contribute to cardiac arrest.

    Because hypertrophic cardiomyopathy is relatively rare, many doctors are reluctant to recommend echocardiograms to screen young patients for the disorder. The screening is noninvasive, but it costs about $1,100.

    No cures have been found for the disease, and doctors can promise nothing to protect patients completely from sudden death or even irregular heartbeats.

    But several forms of therapy can treat symptoms effectively.

    Those treatments include beta-blockers and calcium channel blockers. Pacemakers, implanted automatic defibrillators and surgery to remove a part of the overgrown muscle are also effective, though many doctors recommend them as a last resorts.

    A procedure called alcohol septal ablasion, which uses 100-proof alcohol, is also available. It essentially causes a controlled, localized heart attack, killing many cells of the muscle. Experts say this reduces the likelihood of a severe heart attack.

    Sharon Bates, whose son Anthony died in 2000 while playing football for Kansas State University, has begun crusading for more testing for young athletes.

    "Prevention," Ms. Bates said, "is 10 times better than hopeless resuscitation."

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    [Re: The New York Times]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-16-02 07:15

    I have to say I am very disappointed with this article. She did get items wrong an left out so much including portions of interviews with 2 of our members, who did a great job and the quote from yours truely regarding the caution that needs to be taken in screening for HCM.

    Well at least Sharon and Mike were shown in a good way and Tim's story was told to the world. Lets hope there are fewer Tims in the future.

    Lisa

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    [Re: The New York Times]

    Author: CONNIE (---.direcpc.com)

    Date: 07-17-02 10:07

    HI EVERYONE..........I WATCHED A NEW RELEASE MOVIE AT HOME LAST NIGHT CALLED "JOHN Q". HIS SON HAD A HEART PROBLEM THAT SOUNDED CLOSE TO H.C.M. WHEN THEY WERE DESCRIBING IT. TAKE A LOOK AT THE MOVIE AND SEE WHAT YOU THINK...............CONNIE

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    [Re: The New York Times]

    Author: Dora (---.proxy.aol.com)

    Date: 07-17-02 12:58

    Hi Connie,

    I have not seen "John Q", but about a week ago on the new series of "Dead Zone" it was about a boy that had heart problems, the guy "John" that is the main player on the movie sees things ahead of time. He was a coach and saw that this boy had a heart problem. It ended up being cardiomyopathy. Was really interested to see it as they did all kinds of test and nothing showed up until he collaped then they did a echo and found it. Everybody was upset with John because when they did the test nothing showed up. John had pulled the boy out in the last inning, and if he hadn't the boy would of probably died.

    Dora

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: The New York Times]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 07-17-02 17:22

    Hi everyone,

    I watched the same movie about a week ago..."Dead Zone" Actually, I only saw the first half and I figured it was HCM or something like it. Anyhow, I guess I was right. It was kinda hard for me to watch this movie because it started putting me in one of those down moods. But I guess it's good there are movies out there that help educate the public about this disease.

    And I'm also happy to see acticles such as the one in New York Times about HCM. Although I am sad to hear about little Tim and others who have lost their lives, I think it really helps get the word out about HCM. Hopefully the more people know about it the better managed it can become!

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