Our journey began long before my son, Hussein, was born. Due to a family history of SMA, my husband underwent genetic testing to be sure he was not a carrier. We received news that he was clear, and based on that reassurance, I was not tested. We believed the…
A new high-dose regimen of Spinraza (nusinersen) was recently approved in the U.S. as a treatment for spinal muscular atrophy (SMA), with clinical trial data showing a safety profile broadly consistent with the original 12 mg regimen, first approved a decade ago, and suggesting the potential for greater…
Spinal muscular atrophy (SMA) is more common in wealthier countries across the globe, likely reflecting increased access to diagnostic tools, newborn screening, and modern treatments. That higher prevalence — the total proportion of a population living with a specific condition at a given time — would normally suggest a…
Discussion
Unintentionally, last year, most of my immediate family bought me Christmas gifts with the same theme. My brother, Gabriel, got me a handmade blue-and-white scarf from China. Mom got me a sheer-ish white shawl. My stepdad got me a red knitted cardigan. See what they’re all aiming for yet? Together,…
Discussion
On a recent Saturday morning, the dryer wouldn’t turn on. The washer held a big load of washed towels. As our recently adopted dog, Ellie, was still in unexpected heat, laundry duty was steady. I couldn’t summon the repairman until Monday. Later that morning, the ceiling fan in the…
Discussion
There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2, I know I have a few visible, physical indicators of…
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