I’ve written columns about community and connection. I chose these topics because they’re relevant not only to those of us with rare, chronic conditions, but to everyone. I write through the lens of living with limb-girdle muscular dystrophy, but I strive to connect to all of society.
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I spent part of this week with three of my sons in Denver. On Wednesday, they had a clinical trial appointment, followed by an appointment at the assistive technology clinic to try out some robotic arms. In anticipation of the latter, I began to reflect on my sons’ journey…
Researchers have developed a way to enhance the efficacy of exon-skipping therapies for Duchenne muscular dystrophy (DMD), and the approach showed promise in a mouse model of the disease. The study, “A Combinatorial Oligonucleotide Therapy to Improve Dystrophin Restoration and Dystrophin-Deficient Muscle Health,” was published in Molecular Therapy…
Duchenne muscular dystrophy (DMD) treatment Exondys 51 (eteplirsen) may help protect the heart as well as muscles used for movement, a study found. The treatment slowed heart function decline, raising the possibility it could lower the risk of cardiomyopathy, a serious condition that can lead to heart failure.
For years, I told the kids we couldn’t get another dog unless something happened to the two we already had. I did not want three dogs! I didn’t have room for that! Yet we now have a new puppy. My life is bursting at the seams most days, given that…
Becoming educated and informed about muscular dystrophy is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your muscular dystrophy journey.
There is no cure for muscular dystrophy yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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