There’s a certain rhythm to gardening that I’ve always loved. The early mornings, the quiet work of turning soil, the satisfaction of seeing something grow because you cared for it. In my backyard, I’ve built raised beds filled with vegetables and herbs — nothing fancy, but enough to keep my…
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I know what you’re thinking: another awareness day. One more health observance to briefly acknowledge for 24 hours, then mindlessly scroll past once it’s over. But for ultra-rare neuromuscular conditions, awareness is everything. Disease-specific awareness days actually matter. They create exposure, support, belonging, hope, and collaboration that can have a…
It started long before I had the words to explain it. At 9 years old, I noticed small things: I struggled to lift my arms the same way as my friends, I grew tired more quickly, and others were much faster than me. But at that age, it was easy…
This article was provided by our partner, the Muscular Dystrophy Association. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Muscular Dystrophy News…
Living with a rare disease is incredibly complex, with countless layers to navigate. Managing daily life amid so many unknowns — and trying to find a regimen that truly works — can feel overwhelming. From the routine of medications and other relentless therapies to countless medical frustrations, we’re forced…
I was born in March 1988 with the umbilical cord wrapped around my ankles three times. My heart rate dropped to zero, and the doctors had to do an emergency cesarean section to save me. I still reached all my milestones like a normal baby. When I was 6 years…
My family and I are part of a community of boys, men, and families living with Duchenne muscular dystrophy. That community extends far beyond the U.S., where we live. Families uniquely experience Duchenne in the context of their own country, but there is a commonality in that we all…
We had only been married a few months when my husband woke me in the middle of the night to help him reposition. Half-asleep and irritated, I got up and muttered in the darkness, “I don’t want a husband anymore.” I didn’t remember saying it until he told me the…
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