Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.“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 had a good chuckle, there was also some validity behind it. Given my scoliosis, hiatal hernia,…
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 season brings, I simultaneously face a significant challenge: The medical team at my hospital is changing.
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, this classic tune has been an anthem of summer for decades. For most, it’s joyous. It’s…
“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 words “findings are unremarkable.” Of course, this news was ultimately good. Unremarkable findings meant nothing serious…
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 present. Fighting any kind of respiratory illness can be life-threatening for someone living with…
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 recently when they came across a large trash bag filled with some of my stuffed animals.
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 hills were now shiny and smooth, and the frozen landscape glistened in a magical way. The…
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 apitegromab is intended to target a protein in the bloodstream that inhibits muscle growth with the…
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 spreading across the country. All I could do was roll my eyes. After the past several…
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 the realities I’ve lived with and grown accustomed to for 34 years, there are still some…
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