As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation. When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive…
Discussion
I live in rural Nebraska with my husband, Jason, and seven children. Three of them — Max, 20, Rowen, 17, and Charlie, 15 — live with Duchenne muscular dystrophy (DMD), so I am a mom to many as well as a caregiver. At times, it feels like I’m giving…
Boys with Duchenne muscular dystrophy (DMD) may be able to regain lost height and overcome growth stunting by switching from traditional steroids to the newer medication Agamree (vamorolone), a new study suggests. While standard corticosteroids are essential for managing DMD-related inflammation, they are known to halt bone…
Bridgebio Pharma has submitted an application asking the U.S. Food and Drug Administration (FDA) to approve its experimental oral therapy, BBP-418, to treat limb-girdle muscular dystrophy type 2i (LGMD2i). If approved, BBP-418 would become the first available treatment for LGMD2i, also called LGMDR9. In fact, according to…
Discussion
As parents, we dedicate our lives to raising our children. We work long and hard, striving to meet their needs, teach kindness, encourage a strong work ethic, and foster self-advocacy. Our goal is to help them grow into successful adults. As a mom of many, I can see my and…
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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