Like most humans in the world, I do not like to cry in front of other people. My life with SMA does not allow me a lot of grace to conceal my physical weaknesses and vulnerabilities. It is obvious to any random stranger that I cannot walk, and…
Discussion
Note: This column describes the author’s experiences with Cymbalta (duloxetine), Prozac (fluoxetine), and Celebrex (celecoxib). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. After months of agony — and I mean agony — I finally decided to go off…
Discussion
Note: This column describes the author’s own experiences with fentanyl and other pain medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “You really know pain, huh?” someone asked me, eyes wide with concern. In response to their offering me…
Spinraza (nusinersen) is able to help slow lung function decline in people with spinal muscular atrophy (SMA), even if treatment is started when patients are already experiencing disease symptoms, a new study shows. The beneficial effects of the approved SMA therapy on lung function were generally more pronounced…
People with spinal muscular atrophy (SMA) show high long-term adherence to treatment with Evrysdi (risdiplam), with several patients remaining on the oral therapy after three years, according to a real-world study in Spain. The observational study, which involved adults and children with different SMA types, demonstrated that all…
Discussion
My aunt, who doesn’t throw anything away, recently sent me an artifact from my childhood: a pink paper pamphlet titled “Meet Connie.” I was diagnosed with SMA type 2 when I was 18 months old and started using a power wheelchair when I was in first grade. Around the…
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