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HeartBrothers Webinar Examines Hypertrophic Cardiomyopathy—the Most Common Genetic Heart Disease

Dr. Martin Maron, Leading Expert, Discusses Treatments

Tom Bull knew he might have heart trouble ever since his younger brother was born with a hole in his heart. But Tom seemed completely healthy for years—even playing goalie on his hockey team and center on his basketball team.

“When I was 15- or 16-years-old, the doctors came to me and said I couldn’t play sports anymore. I was largely asymptomatic, but they were being ultra-cautious,” he said.

After college, things started going downhill fast for Tom. He was diagnosed with hypertrophic cardiomyopathy (HCM) and listed for a heart transplant. He was hospitalized for eight months at Tufts Medical Center until receiving his life-saving new heart.

“It’s been an amazing recovery,” Bull said. “Life is so different and better. I couldn't carry a basket of laundry up the stairs. Now I’m like a machine. I walk three to four miles a day. I feel like I’m the luckiest man in the world.”

Bull spoke at a recent webinar on HCM sponsored by the HeartBrothers Foundation, a nonprofit that serves thousands of heart failure patients and their families with financial and emotional support, along with lodging at the HeartBrothers House in Boston’s Back Bay. Bull managed the HeartBrothers House for several months as a volunteer.

HCM: the most common genetic heart disease

Hypertrophic cardiomyopathy is a thickening of the heart muscle, making it harder for the heart to pump blood.

“HCM remains the most common cause of sudden cardiac death in young people and a major cause of heart failure at any age,” said Dr. Martin Maron, an internationally renowned HCM expert who runs Lahey Hospital and Medical Center’s Hypertrophic Cardiomyopathy Center and spoke at the HeartBrothers webinar.

HCM is genetic, and there’s a 50% chance that an affected person will pass the disease on to their children. One in 500 people will be diagnosed with HCM.

“The mutation becomes active during puberty,” Maron explained. “That’s when a patient can be at-risk for developing symptoms.”

HCM symptoms are similar to heart disease—shortness of breath, chest pain, palpitations, fatigue, and lightheadedness.

“I started having cardiac asthma and passing out. It was hard to breathe,” remembered HCM and transplant survivor Darlene Goodwin, who appeared in the webinar. HCM is common in her family.

“Many, many family members have passed away. My dad had five siblings. Four died before they turned 30.”

Goodwin’s son Tim also has HCM but is largely asymptomatic in his 40s. Still, he is anxious.

“It’s been hanging over my head my whole life,” he said. “You have a timer that’s waiting for you.”

‘The heart is like a stiff balloon’

There are two types of HCM. Obstructive HCM is the most common, making up about two-thirds of all HCM patients. Medications and catheter-based treatments can help with obstructive HCM.

With non-obstructive HCM, however, a heart transplant is often the only treatment.

“The heart is like a stiff balloon,” explained Maron. “If it doesn’t relax, it doesn’t fill well with blood, leading to increased pressure, and a decreased amount of blood flow going out of the heart. That leads to heart failure.”

There is some good news, however. Non-obstructive HCM is highly treatable, with a heart transplant.

“[With] many, if not almost all, patients, we get them to the finish line with a good quality of life and normal longevity,” Maron said about HCM heart transplant recipients. “We do believe we can get excellent outcomes in almost all cases.”

‘I couldn’t be more grateful’

Bull and Darlene Goodwin both had successful heart transplants. So did Karen Klimzcak, who was diagnosed with HCM after many years of symptoms. She also spoke at the webinar.

“I was an active child, playing tennis in the heat, running, hiking lifting weights. When I was 23, I started passing out at times when I’d be active. I’d go out for a run and five minutes later I’d be on the ground.”

Klimczak finally received her new heart on New Year’s Eve, 2020.

“I couldn’t be more grateful,” she said.

All the HCM patients in the HeartBrothers webinar agreed that the key to living a healthy life is getting an early diagnosis and treatment. Click HERE to learn more about Dr. Maron and his HCM Center at Lahey.

The next HeartBrothers webinar will be Thursday, May 19, at 5:30 pm Eastern.
Hear the stories from caregivers who stand by their loved ones on their journeys
from heart failure to heart transplant and beyond.
Learn more HERE.


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