Healthy Body
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Living with Hypertrophic Cardiomyopathy
An Interview with Lisa Salberg, founder & CEO of HCMA
February 2019
By Carol Lippert Gray
What is Hypertrophic Cardiomyopathy (HCM)?
HCM is an inherited condition in which an area of the heart becomes thickened without an obvious cause. As a result, the heart becomes a less efficient pump. Symptoms vary: there may be none or there may be fatigue, leg swelling, chest pain, palpitations or shortness of breath. Some people experience dizziness or fainting. Complications may include heart failure, an irregular heartbeat and sudden cardiac death. It affects men and women equally. About 1 in 500 people of all ages may live with HCM.
HCM is an inherited condition in which an area of the heart becomes thickened without an obvious cause. As a result, the heart becomes a less efficient pump. Symptoms vary: there may be none or there may be fatigue, leg swelling, chest pain, palpitations or shortness of breath. Some people experience dizziness or fainting. Complications may include heart failure, an irregular heartbeat and sudden cardiac death. It affects men and women equally. About 1 in 500 people of all ages may live with HCM.
About the Hypertrophic Cardiomyopathy Association (HCMA):
Lisa Salberg founded HCMA in 1996 after losing her sister and other relatives to HCM. The HCMA is a nonprofit organization committed to improving the lives of those with HCM, preventing untimely deaths and advancing global understanding. HCMA is committed to advancing research and to providing support, education and advocacy to those with HCM. It has an active membership of over 10,000 families and provides information worldwide via its website, serving an estimated 200,000 people per year. HCMA's headquarters is in Denville, NJ.
Lisa Salberg founded HCMA in 1996 after losing her sister and other relatives to HCM. The HCMA is a nonprofit organization committed to improving the lives of those with HCM, preventing untimely deaths and advancing global understanding. HCMA is committed to advancing research and to providing support, education and advocacy to those with HCM. It has an active membership of over 10,000 families and provides information worldwide via its website, serving an estimated 200,000 people per year. HCMA's headquarters is in Denville, NJ.
Lisa (pre-transplant) Speaking at the Elizabeth McNamee Annual 5K Run
West Islip NY (2012) |
Lisa Salberg’s Personal Journey:
There is a very personal and heartbreaking story behind Lisa Salberg’s founding of HCMA. Her grandfather died of sudden cardiac arrest at the age of 43. Her paternal great-aunt suffered a massive stroke, secondary to HCM, and died at 52. Her uncle died of sudden cardiac arrest at the age of 48. In the spring of 1995, Lisa’s sister began to experience congestive heart failure, which wasn’t recognized or treated. She subsequently suffered cardiac arrest and died at 36, leaving behind two young children who have since been raised by Lisa and her family. Her father, Larry Flanigan, passed away in June 2008 after lifelong misdiagnoses and, finally, identification of HCM. Lisa’s niece, daughter, cousin and other family members also have HCM. When she was twelve years old, Lisa was diagnosed with HCM after a school nurse detected a murmur. On her honeymoon (at age 22), Lisa suffered a stroke secondary to HCM. As a result, she is partially blind in one eye and has permanent left-side weakness. In 1997, she received her first ICD (implantable cardiac defibrillator), the only true protection against sudden cardiac arrest. At 48, she received a heart transplant. |
Contributor Carol Lippert Gray spoke with Lisa about the difficulty in diagnosing HCM, genetic predisposition and the goals of HCMA.
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How would you describe HCM?
It’s a condition that affects the structure and electrical functions of the heart. There are four kinds: hypertrophic, dilated, restrictive, and right ventricular. The main feature is excessive thickening of the heart muscle. The literature indicates it’s the most common genetic heart condition and affects one in 500 people. There is no gender, age, or ethnic factor. |
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What's the likelihood of developing the disease if another family member has been diagnosed?
HCM is a genetic disorder. Researchers have identified many different genes that cause it, so it’s hard to target for gene therapy. But a new class of cardiac energetics is being researched. People need to be aware of the familial aspect, and we need to make sure we talk about genetic diseases. Not everyone needs to have a bad outcome.
How is HCM diagnosed?
There’s no typical way to diagnose it. The average age at diagnosis is 40. Patients look pretty damn normal. They don’t always have a problem, or it may be intermittent. Symptoms might be brought on by a large meal or exercise. Or you may not recover quickly from a cold, for example. My sister died of mismanagement and misinformation. You’d think that, over time, awareness would grow in the healthcare system.
It’s a gender-blind condition, but are there differences in how men and women receive diagnosis and treatment?
When a man complains, he’s generally evaluated sooner than a woman [with similar complaints]. Women are often told their symptoms are anxiety or stress, so it’s not uncommon that they’re diagnosed later, when their symptoms have become more serious. Women are more likely to be given Xanax and antidepressants when men get cardiac catheterization.
Women and men have different kinds of chest discomfort. In men, it can be pain in the left arm or the feeling of an elephant on the chest. Women can have pain between their shoulder blades, up their neck and into their jaw. But once HCM is diagnosed, it should just be handled as HCM, regardless of gender.
Do lifestyle changes help patients?
It’s a genetic disorder; the disease is the disease. But patients should maintain a healthy lifestyle, stay active, stay involved with a high-volume [medical] center of excellence, and avoid developing diabetes and obesity.
HCM is a genetic disorder. Researchers have identified many different genes that cause it, so it’s hard to target for gene therapy. But a new class of cardiac energetics is being researched. People need to be aware of the familial aspect, and we need to make sure we talk about genetic diseases. Not everyone needs to have a bad outcome.
How is HCM diagnosed?
There’s no typical way to diagnose it. The average age at diagnosis is 40. Patients look pretty damn normal. They don’t always have a problem, or it may be intermittent. Symptoms might be brought on by a large meal or exercise. Or you may not recover quickly from a cold, for example. My sister died of mismanagement and misinformation. You’d think that, over time, awareness would grow in the healthcare system.
It’s a gender-blind condition, but are there differences in how men and women receive diagnosis and treatment?
When a man complains, he’s generally evaluated sooner than a woman [with similar complaints]. Women are often told their symptoms are anxiety or stress, so it’s not uncommon that they’re diagnosed later, when their symptoms have become more serious. Women are more likely to be given Xanax and antidepressants when men get cardiac catheterization.
Women and men have different kinds of chest discomfort. In men, it can be pain in the left arm or the feeling of an elephant on the chest. Women can have pain between their shoulder blades, up their neck and into their jaw. But once HCM is diagnosed, it should just be handled as HCM, regardless of gender.
Do lifestyle changes help patients?
It’s a genetic disorder; the disease is the disease. But patients should maintain a healthy lifestyle, stay active, stay involved with a high-volume [medical] center of excellence, and avoid developing diabetes and obesity.
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What are the goals of HCMA?
Helping families stay whole. According to the CDC Registry of Deaths, there’s been a 25% decline in deaths from HCM over the last eight years. Awareness is higher. Treatment is better. We want to make sure the doctors treating us know what they’re doing. We’ve worked with 36 medical programs around the country to raise awareness, from imaging to fetal medicine and everything in between. How is HCMA funded? We rely on memberships, donations and grants. Our budget is under a quarter of a million dollars a year. |
Lisa with Dr. Barry J. Maron at their recent Gala
Morristown NJ, November 2018 |
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More about Lisa:
Prior to starting HCMA, Lisa worked in human resource management for 17 years. Health insurance, employee benefits, business administration, event planning, employee counseling, analysis and general work flow management were the cornerstones of her career. She is a past president of the North Jersey Personnel Association and involved in many civic events and scholarship programs. When she founded HCMA, she was still working full-time. Lisa acted as course director for the annual HCMA meeting for 12 consecutive years. She co-authored A Guide to Hypertrophic Cardiomyopathy for Patients, Their Families, and Interested Physicians (First Edition: 2001 and Second Edition: 2006) and writes for medical journals and trade publications. Lisa has served on many panels and councils, and she represents the HCMA in several coalitions. |
To Purchase Lisa's Book: A Guide to Hypertrophic Cardiomyopathy: For Patients, Their Families and Interested Physicians |
Carol Lippert Gray is an award-winning public relations professional and longtime freelance writer and editor. She has been published in fields as diverse as crafts and corporate finance, parenting and philanthropy. She is also a regular contributor for Sanctuary.
