After my muscular dystrophy diagnosis in August 1985, I thought I could hide my symptoms from my friends at school. When I started seventh grade a few weeks later, I was in a new building with kids from all over town, not just my neighborhood. I was determined not…
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I type my columns on Tuesdays, but I write them in my head in the days before. I consider what to write, how to begin, and the words to use to share my life experiences. My family is fun, and my columns often reflect that, to show the lessons I’ve…
Three years after receiving the gene therapy Elevidys (delandistrogene moxeparvovec-rokl) in a clinical trial, boys with Duchenne muscular dystrophy (DMD) are showing sustained improvements in physical function compared with what would be expected without treatment, according to new data announced by Sarepta Therapeutics, Elevidys’ developer. “ELEVIDYS is…
In my previous column, I shared my concern about losing more strength due to the progression of my facioscapulohumeral muscular dystrophy (FSHD). This loss was making it increasingly difficult for me to get out of my friend Richard’s Subaru. Richard, who is also a musician, not only drives…
I’ve often written about learning to live alongside uncertainty. Duchenne muscular dystrophy has a way of quietly shaping plans, then loudly interrupting them. Last July, that disruption arrived as burnout during rehearsals for my graduating showcase at BEYOND DIS:PLAY, a performing arts training program in Singapore for disabled…
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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