In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest…
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A combined regimen of testosterone and growth hormone led to significant improvements in muscle mass, strength, and mobility in men with facioscapulohumeral muscular dystrophy (FSHD) in a clinical trial. The Phase 1/2 STARFISH trial (NCT03123913) evaluated the combination therapy’s safety, tolerability, and potential efficacy in men with FSHD.
I expected today, as this column is published, to be long and exhausting. I’d been scheduled to drive to my central Nebraska home from Denver, then help the marching band perform at halftime of the high school football game. I’m a mom to seven children: Lexi, 24; Max, 19;…
Long-term treatment with Duvyzat (givinostat) delays the loss of key motor skills in people with Duchenne muscular dystrophy (DMD), published results from an open-label extension study show. “The sustained benefit observed across functional outcomes reinforces the potential of Duvyzat to meaningfully alter the course of the disease,” Scott…
My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a…
On Aug. 21, I wrote to my local newspaper here in Singapore about a gap in housing policy that affects younger adults with severe disabilities. I’m one of those younger adults: I’m 29 and have Duchenne muscular dystrophy, a progressive condition that leaves me fully dependent on caregivers…
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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