Sleep issues, common in people with spinal muscular atrophy (SMA), may be driven not only by nighttime breathing problems linked to weak respiratory muscles but also by changes in how the brain regulates sleep, a review of studies suggests. “Sleep disturbances in SMA are multifactorial, reflecting both respiratory muscle…
Whole-body quantitative MRI, or qMRI, can track long-term subtle muscle changes throughout the body among adults with spinal muscular atrophy (SMA), despite treatment and clinical stability, a new study reported. In fact, qMRI was seen to work better than clinical testing over time in detecting muscle measures of disease…
Discussion
My mother tried persuading me to get a hospital bed at home for years. “Your uncle can help us source one that the pediatric hospital doesn’t want,” she said at one point. “Our neighbor doesn’t need hers anymore. She offered it to us. Do you want it?” Mom asked…
Discussion
I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would have other children with SMA. Research shows that there is a 25%…
Surgery to implant magnetically controlled growing rods (MCGRs) is a safe and effective option for children with spinal muscular atrophy (SMA) type 1 and scoliosis, according to a study. “MCGR represents a viable and effective surgical strategy for managing [scoliosis] in the medically complex [SMA type 1] population,” the…
Discussion
“Spinal muscular atrophy golf tournament,” I spoke into my voice-to-text software. It was late at night, and I was physically drained. As a result, I knew my speech wouldn’t be very articulate. Nevertheless, I persisted in trying to accomplish some of my tasks for my nonprofit’s upcoming charity golf…
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