Having a disease like Duchenne muscular dystrophy (DMD) made just searching for a therapist I was comfortable speaking with another quandary.
All articles by Alan Hieber, DMD Contributor
Reduced lung function is a signature of Duchene muscular dystrophy, which has concerned me during the pandemic because of COVID’s respiratory symptoms.
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.
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.
Living with Duchenne muscular dystrophy (DMD), I have experienced emergencies on several occasions.
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).
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…
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…