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A family share it's story to help others!


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Lisa Salberg Find out more about Lisa Salberg
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  • A family share it's story to help others!

    Jessica Scalf (a member of the HCMA) is diagnosed with hypertrophic cardiomyopathy, a heredity disease involving a thickening of the heart walls. Her brother Zach Lane of Canton also had the disease and died earlier this month of sudden cardiac death.
    Fatal family trait

    Hypertrophic cardiomyopathy, a hereditary heart disease, strikes Canton siblings

    Fatal family trait (03/23/2005)
    Hypertrophic cardiomyopathy (03/23/2005)

    Wednesday, March 23, 2005


    of the Journal Star

    A few weeks ago, Zack Lane lost his life to a little-mentioned heart disease that may afflict nearly his entire family. He was 29. A single father, with two little girls. Now Lane’s siblings, 24-year-old Joshua Lane and 27-year-old Jessica Scalf of Canton, are on a mission to raise awareness about the disease, its symptoms and the fact that it’s the leading cause of sudden cardiac death in young people.
    Scalf, who for three years has had a pacemaker/defibrillator implanted in her chest, worries less now about her own sudden death than of her younger brother, her own daughter and even her nieces.

    "Am I gonna die?" Joshua Lane wondered loud enough for everyone in the local Canton cafe to hear. "I'm 24. I shouldn't be thinking about stuff like this. I shouldn't have to be dealing with stuff like this. ...

    "I was looking forward to getting older and learning new things about myself. But looking at us now, it doesn't look like that's going to happen. My brother didn't ever reach his 30th birthday."

    Added Scalf bluntly: "He was 29 years, 29 days."

    Hypertrophic cardiomyopathy, or HCM, is diagnosed through the use of an echocardiogram that can reveal the thickening of the walls of the heart that ultimately causes the heart to not function properly. Genetic testing can diagnose the hereditary disease, but not the extent of the symptoms or how severe the 200-some mutations will appear in each individual, according to Robert Bonow, chief of cardiology at Northwestern Memorial Hospital and a professor of medicine at Northwestern University.

    Bonow, the former president of the American Heart Association, said the real problem is the disease is tricky. And genetic testing to confirm diagnosis is expensive.

    "It can be misdiagnosed," he said. "It can masquerade like a lot of other more common disorders."

    Scalf and Zack Lane both had formal diagnoses. Their maternal grandfather also is believed to have died from the disease at 34. Their father has numerous heart conditions, but no formal diagnosis. And Joshua Lane and Scalf's daughter both show numerous warning signs.

    HCM can look like a heart attack. It can appear as asthma. It can appear as a typical heart murmur. It even is often diagnosed as anxiety disorder or panic attacks, according to the Hypertrophic Cardiomyopathy Association, or HCMA, founded by Lisa Salberg of New Jersey.

    Salberg, too, has a life-saving pacemaker/defibrillator. Four of her family members have died from HCM, and four other members currently live with it.

    "Unfortunately," Bonow said in most cases, "it's not diagnosed at all until something catastrophic happens."

    Bonow said the disease affects less than 1 percent of the population; however, busy cardiologists see it frequently. "Lots of the stories you hear of young athletes dying on the playing field are dying from this condition."

    And most of the time they were misdiagnosed, he said.

    Still, the disease has been studied for more than 50 years. Bonow recommends if any family has had a member die unexpectedly from a heart condition under the age of 55, the entire family needs to be screened for HCM. If there is any family history, "I would recommend the family get screened."

    Risk factors

    Bonow said most cardiologists require two of the major risk factors for sudden death before implanting a pacemaker device. Those factors include: family history, cardiac arrhythmia, massive thickness (septum measuring more than 3 mm), adverse blood pressure response or prior cardiac arrest. Some doctors are very comfortable with diagnosing someone with only one of these risk factors, he said.

    This is where Scalf said her family is frustrated. Her 8-year-old daughter Samantha has all the warning signs, numerous symptoms and the all-important family history. Yet, Scalf feels her cardiologists aren't taking the situation seriously enough.

    "She'll be sitting at the table, she'll grab her chest and her heart will just start racing," Scalf said of her youngster. "It's just the same as me."

    Scalf also has a 5-year-old son. That age is typically too young to exhibit major symptoms, but Scalf wants aggressive testing as he gets older.

    Even with years of study, Bonow admits there are areas throughout the country with less awareness of the disease. People who suspect they have the disease need to see a specialist.

    While genetic testing can reveal up to 10 different genes that can mutate to cause the disease, Salberg said it's not until puberty when the thickening of the heart walls begins to show up and can be revealed on an echocardiogram.

    Joshua Lane suffers from frequent racing heart rate, shortness of breath, chest pain and more. He was diagnosed with athletically induced asthma while in high school. Without the HCM diagnosis, however, Joshua cannot get the pacemaker/defibrillator that has shocked his sister's heart back into rhythm 18 times.

    According to Scalf, doctors told the family Zack's HCM wasn't serious enough to warrant a pacemaker.

    "They told my mother that the form Zack had was non-life threatening," Scalf said, adding now they've cremated his remains and worry about his children. The family could hardly find a picture of the former Maytag worker, turned college student, without one or both of his girls in his arms.

    "I believe if he had a pacemaker, he'd still be alive today," Joshua Lane said.

    The death of her sister and the same lack of awareness of the disease brought Salberg to form HCMA in 1996.

    The problem is the disease is so variable, she explains, agreeing that an affected family can have one member with the genes but no symptoms and another family member completely debilitated with the disease.

    "We don't know why it's so debilitating in some and in others so non-chalant," Salberg said.

    Basically, with HCM the cell structure in the heart is improper, Salberg said. There are 10 different genes with over 200 different mutations that cause the same disease. And just because someone has the gene doesn't mean they will exhibit the disease. Carriers have a 50-50 chance of passing the disease on to their children.

    "There is a misunderstanding in the medical community," Salberg said of the disease, which is more common than cystic fibrosis or muscular dystrophy. "We don't understand all the risk factors well enough to determine the risk of sudden death."

    "... The disease needs to be taken more seriously. We understand the disease more than we did 10 years ago. We know there are a lot of people out there at risk and don't know it. And we don't want to lose any more young people. I would think (Zack) would have had a defibrillator."

    For more information on HCM, go to www.4hcm.org.
    ************************************************** *********

    Thank you to Jessica, Dr. R. Bonow and the entire Lane family for assisting in this article - -it is articles like this that help the world learn about HCM.

    God Bless Zack

    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)

  • #2
    Hypertrophic cardiomyopathy
    Related stories

    Fatal family trait (03/23/2005)
    Hypertrophic cardiomyopathy (03/23/2005)

    Wednesday, March 23, 2005

    - WHAT IT IS: The main feature of HCM is an excessive thickening of the heart muscle. Thickening is seen in the ventricular septal measurement (normal range is .08 to 1.2 mm) and in weight. In HCM, septal measurements may range from 1.3 mm to 6 cm or greater.

    - WHO'S AT RISK: HCM is a primary and usually familial cardiac disorder. Scientists have discovered 10 genes with more than 200 mutations that can result in the disease. And any person could be the first to present the mutation. If a blood relative has died of sudden cardiac death before the age of 55, experts encourage all family members to be tested for HCM.

    - SYMPTOMS: While there is no particular symptom or complaint which is unique to HCM, here are some of the most common that may occur at any stage in a person's life: shortness of breath during exercise or at rest, fatigue, chest pain during exertion or during sleep, palpitation or an uncomfortable awareness of the heart beat, light-headedness, blackouts, dizziness.

    - COMMON MISDIAGNOSIS: Most commonly seen is asthma, specifically "athletically induced asthma," as a first sign or symptom. It is also common to have a diagnosis of "mitral valve prolapse" prior to a proper diagnosis of HCM. It is not uncommon to see people diagnosed with anxiety attacks, panic attacks or some forms of depression only to find that the underlying cause of the symptoms is HCM.

    - TREATMENT: Although there is no cure for the disease, treatment options include drug therapy, a heart transplant, or implantation of a pacemaker and/or automatic implantable defibrillator, which detects arrhythmia and offers a shock to restore a normal heart rhythm.

    - FOR MORE INFORMATION: Visit the Hypertrophic Cardiomyopathy Association Web site at www.4HCM.org.

    Source: HCMA
    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)