HCM Advocate Gets to the Heart of the Matter

Featured Article, Healthy Heart
on February 17, 2014

To an outward observer, Lisa Salberg, 45, appears to be a perfectly fit, healthy woman. But Lisa, who inherited a genetic heart disorder known as hypertrophic cardiomyopathy, or HCM, lives with the imminent threat of sudden cardiac arrest.

“People with [HCM] look normal. We don’t look like we are sick,” Lisa says. “But we have limitations—we can’t do everything everyone else can. Because we are masquerading as normal, healthy human beings, though, we are not seen. We just blend into the background.”

As the founder and CEO of the Hypertrophic Cardiomyopathy Association (HCMA), Lisa has worked tirelessly since 1996 to vanquish this prevalent—but under-diagnosed or overlooked—heart condition. It is a cause that’s very close to her heart, no pun intended: Lisa has lost countless relatives to HCM-related cardiac episodes, including her father and older sister.

HCM is a form of heart muscle disease in which the ventricle walls become abnormally thickened, disrupting the flow of blood through the heart. It is a relatively common heart condition, affecting some 1 in 500 Americans.  Although most cases of HCM are relatively benign, some forms can lead to heart failure or sudden cardiac arrest, particularly in younger patients.

Growing up, Lisa had long been aware that her father’s side was stricken by inexplicable heart problems, but the underlying cause of the cardiac events was unknown. Then, at age 12, Lisa was diagnosed with hypertrophic cardiomyopathy (HCM) after a nurse detected a heart murmur during a school check-up.

Three weeks after her wedding, at the age of 21, Lisa suffered a stroke secondary due to HCM. But in spite of the onerous knowledge that her heart could someday give out, Lisa continued on with her life, putting her faith in modern medicine to keep her safe.

“For some silly reason I thought that because science and progress and time were moving forward, that we were better at managing the disease,” she says.

In 1995, when she was 8 months pregnant, Lisa’s sense of complacency was shattered when her older sister, Lori, died of sudden cardiac arrest at the age of 36.

“Emotionally, I was devastated,” Lisa remembers. “I felt like HCM had been cruelly unfair yet again. My sister was my best friend, and I lost my sister and best friend three weeks before my daughter was born.”

Lisa had falsely assumed that HCM was something she wouldn’t have to deal with until long down the road, but her sister’s death jolted her to the grave reality of her situation. “At age 26, I had to take this condition very seriously, very quickly,” Lisa says.

Still reeling from the tragedy, Lisa gave birth to her daughter a few weeks later. Not long after that, she and her parents fought for custody of her sister’s two children, then 13 and 10, one of whom was found to carry the HCM gene.  “I was now a parent of three,” Lisa says. “So my immediate instinct was, ‘I’ve gotta take care of myself.’”

Soon, Lisa’s grief at the loss of her sister morphed into a fierce, angry tenacity to take a stand against the disease that had wrought so much havoc on her life—and a fervent desire to get the word out there about HCM. Feeling that she wasn’t receiving the proper medical attention she deserved, Lisa took matters into her own hands. She became a champion of her own healthcare, doing extensive research in order to educate herself about HCM.

“I admit that my initial actions were very reactionary,” Lisa says. “My sister died because there was nobody there to help her through the process. So I gained knowledge. I knew I could help somebody else through the process. I wanted to help others who were going through the same thing.”

Armed with an instructional book on HTML coding, Lisa created a rudimentary website in 1996, not long after the advent of the Internet, to serve as a platform for disseminating information about HCM. “I learned about this new thing called the Internet in 1995, so I decided to try to use this new tool to do something good for people,” Lisa says.

Eighteen years later, that initial website endures as www.4hcm.org, the homepage for the Hypertrophic Cardiomyopathy Association (HCMA), the 501(c)3 organization Lisa established in 1996 to provide support, advocacy and education about HCM to patients, the medical system and the general public.

To date, the HCMA has been instrumental in driving crucial awareness for hypertrophic cardiomyopathy and has served as a main source of information for the estimated 1 million Americans who live with the condition. Lisa has also focused her efforts on passing impactful legislation in her state of New Jersey aimed at helping identify student athletes who are at risk of sudden cardiac arrest.  In 2013 the Scholastic Student Athlete Safety Act and the Children’s Sudden Cardiac Event Reporting Act were signed into law by Gov. Chris Christy.

The act was partially inspired by Lisa’s daughter, Becca, who was diagnosed with HCM at age 10. In spite of her heart troubles, Becca was an active teen, thriving as an equestrienne. Because HCM is the leading cause of sudden cardiac arrest among young athletes, Lisa wanted to educate families and their children about their risks and limitations.

But Lisa also admits another “ulterior motive” to these pieces of legislation: “While I do want to identify and save children, statistically we know that it’s much more likely for the parent to be the one who dies of sudden cardiac arrest than the child. So if we are able to identify warning signs in children, then we should identify them in Mom and Dad, too,”  Lisa says. “Then we will not just save a child—we will save a family.” To this end, the HCMA offers a free “Risk Assessment questionnaire” at 4hcm.org to help families identify if they may need additional testing.

HCM can be diagnosed via an echocardiogram, but symptoms of the condition are often subtle or non-existent—which is why it’s especially important to pay attention to warning signs in the family tree, Lisa says.

“You can learn an awful lot about genetics just by looking at your family history,” Lisa says. Unlike other heart conditions, lifestyle factors do not contribute to the development of HCM. “This is a genetic cardiovascular disorder. You didn’t eat anything wrong, or do anything wrong. You just got a bad gene,” she explains.

Even though she was dealt a poor genetic hand, Lisa refuses to sink into despair, relentlessly propelled forward in her noble mission by the memory of Lori and all of the other family members who have gone before her.

This February, Lisa published her third book on A Guide to Hypertrophic Cardiomyopathy, 3rd Edition (Wiley Health Sciences) “[My sister] gave more in her death than anybody could have ever predicted,” Lisa says. “She gave me the power to help thousands and thousands of people that she’ll never know, and save thousands of lives in the process. Often I try to answer that question, ‘Why? Why her?’ It was for a greater good. It just took a long time to see it.”

Update: Lisa’s HCM has since progressed and she is now on the heart transplant list. She is still running the HCMA while living with a PICC line—a truly impressive feat! You can read more about Lisa’s journey on her GoFundMe page.