How a simple page turn became a big victory
As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm.
Life, One Cup at a Time
— Alyssa Silva
Alyssa Silva is a writer based out of Providence, Rhode Island. She was diagnosed with SMA type 1 in 1991 when she was just 5 months old. Aside from writing, Alyssa is the chief creative officer for an intimates brand and runs a small business selling her artwork. In her free time, you can find her canceling plans to hang out with her golden retrievers, watching reruns of “The Office,” and convincing others why Taylor Swift is the greatest of all time.
Featured Post
A magazine article was my family’s lifeline during my SMA diagnosis
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs…
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What I hope you’ll understand this SMA Awareness Month
“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me. Though everyone in the room…
Rotating part of my medical team every year takes an emotional toll
As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this…
What it really takes to take me out to the ballgame
If you’re American and have attended a baseball game, then I imagine you’ve probably heard the song “Take Me Out to the Ball Game.” Known as the most beloved song in baseball,…
Navigating the medical mystery of my lower back pain
“I feel like my body is gaslighting me,” I said to my dad in frustration after checking my MRI results. While I was hoping to get some answers, there in plain sight were the…
Defining ‘good health’ on my own terms
Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a…
How a stuffed horse brought back a heavy childhood memory
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement…
Finding light in the winters of life with SMA
A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky…
How new SMA treatments are turning hope into reality
Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug…
A respiratory illness left me fighting for my life
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been…
Finding gratitude, even amid the toughest battles of life with SMA
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are…
