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One night I was awakened by what felt like a pounding heartbeat. I watched some TV until the thumping in my chest finally relented. When I was around middle school age, I had several episodes similar to this. From that moment until this day, heart-related issues have played a significant role in managing my Duchenne muscular dystrophy (DMD).

That said, strides have been made in the treatments available to quell these issues.

The instances of rapid heartbeats began when I was having lunch at school one day. While I was eating, I suddenly felt an irregular beat in my chest. I became alarmed when I noticed this feeling was staying constant instead of waning. Frightened and in tears I went to the nurse’s office with my school aide to get checked out. It was confirmed that the heartbeat was irregular. I then went home and rested it off.

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After experiencing a similar issue throughout that year my doctors prescribed me a beta blocker. This is typical in the medication regimen of DMD, especially for heart rhythm problems. Another indicator for use of cardiac drugs in DMD is fibrosis or scarring on the heart. As early as age 10, ACE inhibitors are prescribed. Aldosterone antagonists are used when an MRI detects scarring. Then there is the use of SGLT2 inhibitors for significant heart dysfunction. I’m currently on each of these except the latter.

I asked a cardiologist I’ve seen at Cincinnati Children’s Hospital Medical Center just how much innovation has been made in heart care in DMD.

“We knew very little about cardiomyopathy in DMD 10-20 years ago. We knew the heart could be affected, but we didn’t know when this started, how it progressed, and how to treat it,” Chet Villa, MD, said. “This led to significant undertreatment at most centers around the country even after cardiac function started to decline. Today we have data from MRI studies showing when the early stages of heart disease begin, how it progresses in the early stages (we’re still working on the 20s and 30s), and how to treat it with meds that are already available.”

Read about experimental therapies for DMD

As a 28-year-old, I’d rather worry about metaphorical heartbreak than the real thing. It can become very overwhelming to think of what might happen to me. It can cause me to avoid certain situations where I’m afraid there could be a strain on my heart. In recent years, however, I’ve noticed that my cardiologists have made an effort to make mental health a priority, which I asked Dr. Villa to discuss.

“This was neglected for a long time. We were one of the first centers in the country to have a full-time psychologist join our clinic a couple of years ago,” he said. “I think this is one of the most important things we can do to keep people living longer and feeling better. Living with DMD can be very stressful, even when things are going well.

“Appropriate psychologic therapy is probably just as important for overall long-term well-being as cardiac and pulmonary treatment.”

Though it’s not a certainty, Dr. Villa is encouraged that data suggest more people with DMD will have their lifespans extended under current treatments. In the next couple of years, there is a potential for newer therapies that could make skeletal muscles stronger, benefiting the heart and lungs. There is plenty of progress still to be made too.

“We need to develop new medications and then test them on the heart in clinical trials,” Dr. Villa said. “The neurologists are way ahead of us in this regard, and we are only just starting to create a nationwide network to help with this. We are about 10-15 years behind in cardiology, but we’re catching up quickly.”