“Did you tell your siblings my medication costs about $1,000 SGD [$783] per day, before subsidies?” I texted my dad a couple of months back. It had been years since his elder brother and sister had seen me. As fate would have it, I was due for phenol and steroid…
Discussion
Some of my earliest memories are of my mom helping me get dressed up for ballet. Nothing says prima ballerina vibes like a leotard, some tights, and chunky 80s-style leg warmers. I was 4 years old, and I wasn’t actually going to a ballet lesson; I was going to my…
Discussion
Another day, another trek to Gillette Children’s Specialty Healthcare. This time, though, it’s for something I’ve never done before: a cortisone injection in my right hip. For all I’ve written about chronic pain over the years, I don’t think I fully understood how debilitating it can be until just recently. It…
Discussion
The U.S. Food and Drug Administration (FDA) has once again found problems at a manufacturing facility that was included on Scholar Rock‘s application seeking approval of apitegromab, its experimental muscle-strengthening agent for spinal muscular atrophy (SMA). In light of the continued issues at the facility, Scholar Rock…
Discussion
I promise I’m not being negative or dramatic when I say I can’t do anything on my own, and I don’t lack confidence in myself, either. It’s just a fact that with my severe disability, I need help with literally everything. That isn’t a bad thing. It’s a truth that…
Discussion
Children with spinal muscular atrophy (SMA) have a higher risk than their peers in the general population of developing severe respiratory syncytial virus (RSV) infections, a nationwide study from Taiwan found. SMA kids were more likely to be hospitalized, require admission to an intensive care unit (ICU), and use…
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