When Medicine is Needed for Medicine in DMD Treatment
I was 10 years old when I began a daily regimen of 30 mg of prednisone taken orally. This is how I’ve started each day for the last 17 years.
DMD Columns
Why Some Tests for DMD Treatment Make Me Feel Like Just a Number
As a patient with Duchene muscular dystrophy (DMD), I understand how vital testing is in the care process since this disease impacts several muscle systems.
How a Lack of Understanding of DMD Nearly Cost Me My Life
Living with Duchenne muscular dystrophy (DMD), I have experienced emergencies on several occasions.
Here’s Why the Trajectory of Care Standards for DMD Is Rising
In 2004, I started receiving care at Cincinnati Children’s Hospital Medical Center (CCHMC) through its neuromuscular clinic. Luckily for me, this was a time when great advances were being made treating patients with Duchenne muscular dystrophy (DMD).
Facing an Uncertain Future With DMD and How I Discussed It With My Doctors
As someone living with Duchene muscular dystrophy (DMD) my mortality is kind of like an “elephant in the room” paying rent in my mind. Just a few decades ago, having DMD often meant survival to the age of 20 was not likely. With advances in medicine, quality of life and life expectancy have made significant…
DMD Lessons Learned from a Sleep Study
Every night, I wear a Bilevel Positive Airway Pressure (aPAP) mask during sleep. For Duchenne muscular dystrophy (DMD) patients, this device is vital for counteracting a serious depletion in breathing function and improving quality of life. As you sleep, your breathing muscles naturally relax themselves, which doesn’t mix well for someone like me. This can…
Entering The Twilight Zone: From Pediatrics to Adult Care in DMD
When you have a rare disease, your medical care is likely specialized. In my case with Duchenne muscular dystrophy (DMD), this has created a unique circumstance in that I’ve been going to the same clinic for pediatric care and now adult care since few providers have such a deep understanding of my condition. This has…
My Spinal Fusion Memoir and What It Taught Me About Patient Care
There is a thin line of a scar that creeps down the center of my back. It is a visual reminder of the spinal fusion procedure I had 16 years ago. Patients with Duchenne muscular dystrophy (DMD) can develop scoliosis – a curvature of the spine – thought to be the result of the progressive…
Don’t Discard “Mental Scars” While Living With Duchenne Muscular Dystrophy
When you have a disease of the muscles, such as Duchenne muscular dystrophy (DMD), its physical nature is clearly visible. What is less visible, but nonetheless important, are the mental scars that arise from living with this disease. In my experience, while I have many of those mental scars, I’ve also been fortunate to have…
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