Life is Not Over

Diagnosed at three months old, Ben, now 29, lives with hypertrophic cardiomyopathy (HCM), a condition in which the muscle of the heart becomes abnormally thickened, making it difficult for the heart to pump blood.

During his early school days, Ben had a low tolerance for exercise and temperature extremes, but his HCM remained stable – until he was 11 years old. “I would have to stop to catch my breath several times just walking one block to my school bus stop,” he related.

He continued to decline and a decision was made quickly – he needed a myomectomy, and that meant open heart surgery to remove a portion of a septal muscle in the heart that was obstructing the flow of blood.

After the surgery, Ben said, he felt better instantly. He finished middle school and when he was in high school, joined the theater group, choir and played the trombone in marching band. “It was the most active I had been. I went from being unable to walk to the bus to being able to perform in the band for years,” he said.

Ben went on to study medical anthropology and epidemiology in college and worked as a medical researcher at the University of Michigan Institute for Clinical and Health Research, where some of his projects involved cardiology. He began to experience more frequent bouts of dizziness and lightheadedness and was advised to stop working and manage his HCM through cardiac rehab and a low-salt diet. He also continues to take a beta blocker, one of many heart medications he has been on since childhood.

“The main thing for me today is fatigue,” he said. “I have to prioritize my day – do I run errands or do my meal prep for the next week? You have to make decisions about what can and can’t be skipped,” he said.

Ben is a member of a large HCM community and the Hypertrophic Cardiomyopathy Association and frequently speaks with patients and parents of children who are newly diagnosed with HCM.

His message offers them confidence and hope: “As someone who has lived with and managed HCM for almost 30 years, I want to let others know, ‘You are not alone, the world is not closed to you and your life is most certainly not over.’”

BMS is currently studying mavacamten, a potential first-in-class cardiovascular medicine for the treatment of obstructive HCM, a chronic heart disease with high morbidity and patient impact.