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Rythm problems in the YOUNG are something to know about...

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Lisa Salberg Find out more about Lisa Salberg
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  • Rythm problems in the YOUNG are something to know about...

    This article ran in my local paper...The HCMA was interviewed for this piece and you can read some quotes from us!
    Lisa

    Young at heart disease

    Dysrhythmias are much more common in youth than the public knows
    By Lorraine Ash, Daily Record

    Eleven-year-old Danielle Brender had just finished drawing a picture of two angels at a neighbor's house on April 15, 2000, when a loud noise outside startled her. She collapsed. It was 3 p.m.

    "You can see she had just completed the second wing on the second angel," said her mother, Sharon Brender of Millburn. "There's a crayon mark trailing off the page from when she fell over."

    At 4 p.m., the little girl was pronounced dead at Overlook Hospital in Summit. Her stunned, grief-stricken family was confused. She'd been so healthy, the only medical issue ever discussed at her pediatrician's office was how tall she'd be. She'd jumped on a pogo stick. She'd studied karate.

    What went wrong?

    When Danielle's siblings and parents had EKGs and genetic tests, the medical mystery was solved: She had died of long QT syndrome, a congenital heart dysrhythmia with two symptoms - fainting and sudden cardiac death. Danielle had never fainted.

    The condition is easy to miss in children who otherwise are perfectly healthy. Avi Brender, Danielle's father, had long QT syndrome, as did three of her four siblings.

    "I had five beautiful, sweet, intelligent children and a wonderful husband," Sharon Brender said. "I would thank God every night for my five healthy children. In fact, I had four children who were at constant risk for sudden death from a cardiac disorder I didn't know they had."

    Avi and the three children now take betablockers, which prevent the symptoms in 90 percent of patients, Sharon Brender said. Her husband and two of her children also have implantable defibrillators.

    The family also keeps at home an automatic external defibrillator (AED), designed to be used by the average person. If a shock is delivered to a person in cardiac arrest within five minutes, he or she can be revived.

    The shame is that 4,000 children and young adults die every year from long QT syndrome, which is treatable if diagnosed, Sharon Brender said, adding that the risk of death is particularly high for the genetically predisposed between the ages of 10 and 20 and for a mother after childbirth.

    To most people the news is that young people have heart problems at all.

    "People should not live with the myth that young people don't have heart disease. I was diagnosed when I was 12," said Lisa Salberg, 34, who has an implantable defibrillator to stave off sudden death from hypertrophic cardiomyopathy, another dysrhythmia. It suddenly killed her sister at the age of 36. As many as 300,000 people in the United States have HCM, which accounts for 40 percent of sudden cardiac deaths in the country.

    "People see the obituary of a young person and they think, 'Drugs. What did that person do to cause this?'" said Salberg, of Rockaway Township, founder of the international Hypertrophic Cardiomyopathy Association. "They didn't do anything. Young people have heart disease. Young people die. We have to do our best to counteract that."

    A dysrhythmia such as long QT syndrome or hypertrophic cardiomyopathy is not the same as an arrhythmia, according to Dr. Jay Curwin, a cardiac electrophysiologist who is part of a cardiac rhythm management team of 18 at Morristown Memorial Hospital.

    "If you use the strictest definition, any skipped beat might be an arrhythmia," Curwin said. "The true word for these disorders is dysrhythmia. It means 'bad rhythm' or 'abnormal rhythm.'"

    Otherly commonly confused terms, he said, are cardiac arrest and heart attack. Danielle Brender died of a cardiac arrest, which means her heart suddenly went into a chaotic rhythm.

    In the case of a heart attack, a blocked artery suddenly restricts the blood supply to the heart muscle, leading to muscle damage. A person's pulse can be normal throughout a heart attack, Curwin said.

    A 2001 study by the Centers for Disease Control and Prevention using death certificates showed yearly sudden cardiac death totals in Americans ages 15 to 34 rose 10 percent from 1989 to 1996 - from 2,719 to 3,000. The numbers are low but the rates have doctors concerned.

    "People who are under the age of 35 should not die suddenly," said Dr. George Mensah, chief of cardiovascular health at the CDC. "We don't expect that to happen and it should prompt us to put in place some mechanism for being able to take a closer look at out-of-hospital deaths in general and sudden cardiac deaths in particular."

    A currently running study of out-of-hospital deaths in one county in Oregon uses not only death certificates but autopsy findings and some clinical history, which Mensah hopes will lead to more information about who's at risk for dying suddenly. While some lifestyle factors, such as cocaine and alcohol use, put some people at risk for sudden cardiac death due to dysrhythmias, genetics play a large role in such disorders.

    Curwin's speculation on the increased death rate is that it doesn't necessarily mean that more people are dying suddenly of cardiac problems.

    "Our genetics haven't changed," he said. "Maybe the statistics have to do with the discovery and understanding of these deaths and better reporting of them."

    He cited Brugada syndrome, which causes sudden cardiac death during sleep. It was identified 10 years ago. People who died of the condition earlier than that may have been documented as victims of an inexplicable respiratory problem. Today, they'd be counted correctly as sudden cardiac deaths.

    Mary Lynn Manlangit, 35, of Rockaway Township, a nurse, lived most of her life with AV node re-entry, a dysrhythmia characterized by an extra pathway in the heart that sometimes causes an electrical impulse to travel around and around the AV node instead of down into the ventricles of the lower heart. The condition, which Manlangit had since girlhood, is not life-threatening. But it is alarming.

    During a dysrhythmia episode her heart would beat 240 times a minute, well over the normal 60 to 100. She'd become lightheaded from low blood pressure. She'd have shortness of breath and feel so exhausted she hardly could speak. Sometimes relief would come with a combination of drugs - Verapamil and Digoxin were the ones of choice during her teen years - and simple exercises.

    "There are different things a patient can do to terminate a dysrhthymia. They're crazy," she said. "You can stick your head in a bucket of cold water, jump in a cold shower, bear down, press on your eyelids. I was not able to do that without the medication. With the medication I could most of the time terminate an episode."

    She stayed on the drugs until her 20s and then went off them. For four years she had no episodes. They returned during her first pregnancy, which can worsen dysrhythmias, she said. There were more episodes when she was 27, during her second pregnancy. Usually they were triggered when she bent down to pick up something from the floor.

    After she delivered her second child, she had radio frequency ablation, a procedure in which catheters are inserted into the heart via veins in the legs and neck. The tissue in the extra pathway of the heart is burned enough so that electricity can't be conducted through the resulting scar tissue.

    It's curative. Manlangit, who hasn't had a dysrhythmia episode in the eight years since the procedure, went on to have two more children.

    "I don't think dysrhythmia is more common now. I think it's more recognized," said Manlangit, who works with dysrhythmia patients. "A lot of times in the past, especially for women, episodes would be blown off as anxiety attacks. It was a small percentage of people who made it to the hospital and had what was happening to them documented on an EKG.

    "There was a large percentage for which the episode would break before they got to the hospital."

    There are many remedies for dysrhythmias, including medicines and ablations. There are implantable defibrillators and AEDs. There are pacemakers for people whose heart beats too slowly, a condition known as bradycardia. But these treatments, particularly those for the more serious conditions that develop in the lower chambers of the heart, do people little good unless they know they have a dysrhythmia.

    Diagnosis is key.

    Each year in the United States, 400,000 to 460,000 people die of unexpected sudden cardiac death in an emergency room or before reaching a hospital, according to the CDC.

    Some of them could be saved if they'd known about their condition, through an EKG, and were prepared with a defibrillator.

    "Now we're putting in preventive implantable devices for people who already had an episode," Curwin said. "If you have a cardiac arrest, though, there's a 98 percent chance you're not going to survive to get that implantable defibrillator. If they don't get to you within five minutes, you're going to start having brain damage.

    "The public push now is having AEDs stationed in populated places like malls and airports. Studies show that even if you use the device wrong, you're rarely going to do harm. There are pads you just stick on the person who fainted. The device will either recognize a rapid rhythm and fire automatically or tell you there are no problems and to do nothing. Or it will say 'Hit red button' or 'Apply shock now.' The user could be anybody. It could be a baker. It doesn't have to be a doctor or nurse."

    The Danielle Brender Fund has raised thousands of dollars to have AEDs placed throughout the Millburn/Short Hills school system, where Danielle grew up. Salberg's Hypertrophic Cardiomyopathy Association also strongly supports strategic public placement of AEDs.

    The American Heart Association awards organizations that promote the judicious placement of AEDs for public health. Last year the Newton Memorial Hospital Foundation received the association's American Heartsaver Award for buying and distributing 100 defibrillators so there would be a five-minute response time for any cardiac arrest emergency in the hospital's service area, which covers Sussex and Warren counties and Pike County, Pa.

    Such awareness can be the difference between life and death. So, too, is personal awareness.

    "If a person feels prolonged incidents of rapid heart beating or fast rhythms associated with lightheadedness or fainting spells, those are serious and you should see a doctor soon," Curwin said. "If you've had a heart attack and you feel your heart doing funny things or thumping around, that's usually more serious, too."

    Sharon Brender believes all children should have an EKG by the time they start school at age 6. The inexpensive, quick test would have caught long QT syndrome in four of her children. It could have saved Danielle Brender's life.

    Salberg takes the point further, saying every person should have an EKG every five or 10 years.

    "We're talking about people literally walking down the street and dropping dead," she said. "Isn't preventing that worth an EKG? Isn't being able to defibrillate them worth the cost of putting AEDs in all the public places people congregate?"
    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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