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HCMA Press Release May 5, 2004

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  • HCMA Press Release May 5, 2004

    NJ-ACC Seeks Most Current Clinical Approaches
    COUNTRY’S EXPERTS TO GATHER AND
    ADDRESS HYPERTROPHIC CARDIOMYOPATHY

    LIVINGSTON, NJ — Date — The New Jersey Chapter, American College of Cardiology (NJ-ACC) will join the Hypertrophic Cardiomyopathy Association (HCMA) for an unprecedented summit of medical experts and the lay population to explore treatments for a disease that daily kills otherwise healthy young people. Slated for June 5 at Headquarters Plaza Hotel, Morristown, NJ, the medical professional segment dovetails with HCMA’s seventh annual weekend program for patients and families impacted by the illness. Atlantic Health System is co-sponsoring the meeting.

    “Hypertrophic cardiomyopathy is the single commonest cause of death in otherwise healthy young people,” says Gregory Sachs, M.D., NJ-ACC governor, “and management decisions have changed substantially in the last year or two. This meeting is a unique opportunity for cardiologists and primary care physicians as well as ancillary healthcare providers. In a single venue, they will hear the thinking of those at major medical centers around the country whose life work involves detection and treatment. It is especially meaningful that the HCMA’s proactive approach has enabled our group to benefit from the presence of these renowned participants.” The summit’s participants include specialists from Mayo Clinic, Harvard University, New England Medical Center, Minneapolis Heart Institute, Cleveland Clinic, and New York’s St. Luke’s Roosevelt Hospital Center.

    Hypertrophic cardiomyopathy (HCM), a disease that runs in families, involves excessive thickening of the heart muscle, primarily in the ventricular septum (wall between the lower heart chambers). HCM is a genetic condition; there is no detectable cause and — if unchecked — the condition can lead to sudden death, usually upon physical exertion. It is estimated that 40 percent of youngsters who collapse and die on athletic fields suffer from HCM. Often telltale symptoms — shortness of breath, palpitation, lethargy, chest pain, and light-headedness —are misdiagnosed. Without appropriate testing, patients may be told they have asthma, mitral valve issues, panic/anxiety, or depression and may receive treatment that, in fact, is contraindicated for HCM.

    Says Lisa Salberg, founder and president of HCMA, “Somewhere, every day, a young person will die from this disease. We don’t have hard and fast statistics because at the current time the Center for Disease Control does not track HCM separately from other forms of cardiomyopathy or perhaps symptoms have mimicked other illnesses.” Ms. Salberg, 35, carries first-hand knowledge of hypertrophic cardiomyopathy. Four family members, including her sister, have died from it and she is an HCM patient as well.

    “I started the organization eight years ago,” she says, “partly out of frustration. There were so many unexplained deaths and such a small body of knowledge out there for family members who, with the right knowledge and treatment, could avert needless death.” Ms. Salberg’s heart disease was detected at 12 when a school screening picked up her heart murmur. Her teen years were uneventful medically but three weeks after she was married she suffered a stroke secondary to her cardiac problems.

    “A year after that I received my first pacemaker,” she says, noting that it ultimately was replaced by a combination pacemaker/implantable defibrillator (ICD). “Treatments run the gamut from medication to implantation to surgery,” she says, “depending on the particular nature of disease. That is why it is important to seek the optimum, personalized clinical approach and to ask the right questions about treatment options. Parents of young children have a special need to be aware of this illness.”

    HCMA is an organization focused on developing an information interchange: patients with patients, patients with physicians, and physicians with colleagues. Ms. Salberg says that “this meeting, where all three kinds of communication will take place, is crucial and exciting.”

    Ms. Salberg says that HCMA members do not have time to focus on tragic outcomes or to “sit and whine” about their condition; instead they seek answers, share information, and work on living normal lives. The June meeting will provide an opportunity for this sharing through speakers, as well as panels and open discussions in unstructured settings. Topics will include surgery, pharmacology, alcohol septal ablation, coping strategies in chronic illness, pediatric cardiology and HCM, the role of insurance in treatment, and current genetic standing.

    “The genetics of HCM are still very hard to evaluate,” says Ms. Salberg, who adds the disease strikes one in 500, yet there is no genetic test available for public consumption. Although genetic research is ongoing, she says that to date researchers have identified 10 different genes with more than 200 mutations. She shares the information about her own family, where a gene mutation at one spot was found after seven years.

    Part of the information involves recognizing risks for HCM’s most disastrous outcomes. These include a previous history of unexplained sudden death in close relatives, a blood pressure drop with exercise or during a stress test, extremely thick heart walls detected via echocardiogram, a history of non-sustained ventricular arrhythmia, and a history of syncope (passing out).

    “We are so lucky to have Lisa Salberg in the patient community,” says Stephen Winters, M.D., Morristown Memorial Hospital director of the Cardiac Rhythm Management Program. “She has an unmatched power to reach out to other patients and has, beyond anyone else, pioneered patient awareness of HCM. She is on target and sets the benchmark for teaching others how to empower themselves.” The immediate past NJ-ACC governor, Dr. Winters is co-directing the program with Ms. Salberg.

    Says Dr. Winters, “The medical community, including cardiologists, is not entirely certain about how to manage HCM. We need to recognize when there is inadequate screening of patients and family members, under-recognition of symptoms, and we need to know the measures to take and the treatments to choose to secure against cardiac arrest.

    “The caliber of professionals presenting at this meeting, right here in New Jersey, usually is found at a national specialty convention,” Dr Winters continues. Those in attendance will come away with a tremendous scope of knowledge that will help them look at their patients, especially youngsters with vague symptoms, with renewed attention.” NJ-ACC and HCMA expect at least 125 patients and 80 physicians to attend.

    “HCMA urges people to visit our website, www.4hcm.org, to see what it is like to live with this disease,” says Ms. Salberg, “especially the message board, where patients have posted information that has in many cases saved others’ lives.” She advises those whose families have a history of heart ailments inform their physicians, especially pediatricians, and start with an electrocardiogram that may lead to further testing.

    “An innocent murmur may be just that,” she says, “but it may be an early warning of something much more serious.”

    To attend the HCMA/NJ-ACC meeting, contact the HCMA office, 973-983-7429.

    The New Jersey Chapter of the American College of Cardiology works to help the people of New Jersey and surrounding areas gain information about when cardiovascular care is appropriate, and how to access the most current treatments through high-quality specialists and medical centers.

    Note to media: Dr. Winters, Drs. Sachs, and Lisa Salberg are available to comment on the upcoming summit on hypertrophic cardiomyopathy. To arrange interviews please contact Michael Cherenson, The Cherenson Group, 973-992-7800, ext. 104.
    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
    Re: HCMA Press Release May 5, 2004

    Hey i printed it and plan on spreading the word around here, it all has to start from something and i plan on trying my best to help in anyway i can, even though i can't make it to the meeting this year which i would really love to come, but my brother and his wife are coming from Oklahoma to visit and they are coming a long way, everyone take care

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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