Finding balance as I manage my DMD-associated cardiomyopathy

Turning 30 last month was a significant milestone in my Duchenne muscular dystrophy (DMD) journey. For years, my care has revolved around keeping my vital functions strong enough to sustain a body whose muscles continue to wither with every passing second.

Having lived with DMD since birth, I’ve witnessed firsthand how the disease stresses and strains the heart, which, like any other muscle in the body, isn’t spared. In 2019, my older brother, Isaac, died from heart failure caused by DMD-linked dilated cardiomyopathy. It was a brutal wake-up call and a harsh reality check for me to take better care of my own health moving forward.

Last month, I discussed with my doctors the next steps for managing my DMD-associated cardiomyopathy. My cardiologist at Singapore’s Khoo Teck Puat National University Children’s Medical Institute has cared for me since 2005. Alongside him, my U.S.-based consultant friend, who connected with me in 2023 after reading my column, has been vital in ensuring my treatment remains current with international best practice.

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In 2023, she recommended I start on the diuretic Aldactone (spironolactone), which I’ve been on ever since. I’ve also been on Vasotec (enalapril), an ACE inhibitor, since 2005 and Coreg (carvedilol), a beta-blocker, since 2012.

Several weeks ago, I wrote to her seeking her advice on my dad’s research. A medical doctor in private practice, he found that sodium-glucose cotransporter 2 (SGLT2) and angiotensin receptor-neprilysin (ARNI) inhibitors could help delay the onset of heart failure in adult patients under long-term cardiac care. She replied that I could potentially benefit from SGLT2 inhibitors, initially developed for diabetes but now used to support heart and kidney health.

She also noted that ARNI inhibitors may lower blood pressure, and mine is already on the low side. We discussed hydration targets of about 2 liters of fluid a day and keeping my blood pressure stable enough to protect my kidneys, as I have stage 1 chronic kidney disease due to congenital bilateral hydronephrosis. This means that both my kidneys had excess fluid and were swollen at birth due to structural defects in the tubes connecting them to my bladder. The issue was surgically corrected in early 1996 when I was 3 months old.

My cardiologist agreed that while these newer drugs weren’t designed specifically for the treatment of Duchenne-related dilated cardiomyopathy, evidence from adult heart failure studies could guide us. After reviewing my latest heart ultrasound, which showed an ejection fraction of 44%-54%, he started me on a daily dose of one tablet of Jardiance (empagliflozin), an SGLT2 inhibitor, on Oct. 21. Still, he opted against an ARNI inhibitor given that I’ve been on Vasotec since 2005.

Two days later, I experienced a health scare with severe fatigue, nausea, and a racing pulse after dinner at 9 p.m. As a result, I decided not to attend the Purple Parade on Oct. 25, which coincided with my 30th birthday. It was disappointing to miss an event that celebrated disability inclusion in Singapore, but I knew resting was the right call.

Learning to listen to my body

At first, I tired more easily and had to use the bathroom more often, which wasn’t surprising, since the medication helps remove excess glucose through urine. My blood pressure held steady, but my pulse was faster than usual.

On Oct. 25, my dad decided to halve the dose, and my energy significantly improved. I started trialing the one-tablet dose again on Nov. 2.

Living with Duchenne means that every new medication comes with a lot of trial and error in the preliminary stages and an extended phase of transitional uncertainty as my body adapts and adjusts to the new normal. Whatever happens next is anyone’s guess. A young Tom Hanks expressed this aptly in the 1994 movie “Forrest Gump”: “My mama always said, life was like a box of chocolates. You never know what you’re gonna get.”

In the same way, it’s challenging even for specialist doctors and researchers to predict what might happen after I start a new treatment. This is why I feel living with Duchenne can be both exhilarating and frightening at the same time — almost like the undulating adventure of a dangerous roller-coaster ride.

The fragility of a DMD body leaves little room for guesswork, yet each step forward feels like reclaiming agency from a condition that often dictates the pace and quality of life. Through these adjustments, I’m reminded that lab results and heart scans don’t always measure progress. It’s the intersection of hope and science that keeps my heart going strong.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.