Like every human being, I am complex. Living with a rare genetic disability like spinal muscular atrophy (SMA) adds another layer to that complexity. Labels like “female,” “disabled,” and “nerd” cannot capture the whole of who I am — my stories and relationships, my joys and sorrows, hopes and…
Discussion
It started with what I had assumed was an ordinary breakout. I’d been stressed from moving for the first time in my life, and had punted on my typically zealous hygiene because, well, moving. You can’t really blame your skin for getting bad when you stop doing the things that make it good. Breakouts are already stressful enough, but this…
Discussion
Treatment with Evrysdi (risdiplam) was associated with stable overall motor function and improved upper limb function in a small Chinese study of 15 people with spinal muscular atrophy (SMA). Upper limb function scores increased in the type 2 group and the combined types 3–4 group, although neither change…
Discussion
This Halloween, an 11-year-old living with spinal muscular atrophy (SMA) named Dash will be trick-or-treating in a costume fit for a galaxy far, far away. Last year, Dash Stanton was selected as the winner of a Halloween sweepstakes on Instagram that was run by the Muscular Dystrophy Association (MDA)…
Discussion
Lily Sander will never forget what it was like to meet other people with neuromuscular diseases the first time she attended Muscular Dystrophy Association (MDA) Summer Camp. Living with Charcot-Marie-Tooth disease, Sander had met only one or two other people with neuromuscular diseases in her city. She was…
Discussion
Baby Jeffrey joined our family in mid-May 1997. Besides his abdominal breathing, alarming only my husband, Randy, he was perfect. Eight weeks later, my physician brother examined Jeffrey. Paul’s typically calming demeanor turned eerily somber after he found a dull-sounding lung and no reflexes. He felt confident our pediatrician would…
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