Reflecting on My Diagnosis Day, 30 Years Later
Last week marked 30 years since my diagnosis day. So many emotions resurfaced as I reflected on the past three decades and all that has happened in terms of medical…
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.
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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…
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Why My Teacher and I Faked My Detention in Middle School
Growing up, I was a fairly well-behaved student. I did my homework. I paid attention during class. I always raised my wand (my way of raising my hand since I couldn’t physically do so)…
A Sibling’s Perspective on Life With SMA
On April 10, the United States will celebrate Siblings Day, a day to honor and appreciate the bond we share with our siblings. I happen to have the best one around, so I…
My Unsolved Symptoms Add Flair to My Rare
These days, I’ve been soaking up all the true crime content I can set my eyes and ears on. Documentaries, podcasts, “Dateline” episodes that I now look forward to every Friday night — I’ve…
My Hopes and Fears Resurface When Others Start SMA Treatment
Recently, in the SMA News Today Forums, a handful of members shared that they were embarking on new treatment journeys with both Spinraza (nusinersen) and Evrysdi (risdiplam). Reading…
What Being Homebound for a Year Really Feels Like
The day after Christmas marked one year since I began this whole self-quarantine thing. And the most unnerving part about it is that I have yet to receive my trophy to commemorate this milestone.
What I’ve Learned From Sharing Stories About My Life With SMA
January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced that…
Stepping Into a New Me in the Year Ahead
In the midst of decking the halls and savoring all that’s merry and bright, December also serves as a season of reflection for me. It’s my chance to look back…
Starting a Small Business With SMA
In October, I fulfilled a childhood dream of mine by finally opening an online art shop. For years, friends and family encouraged me to do this. While I’m no Rembrandt,…
Life With SMA Can Feel Like an Anomaly
Recently, my little hometown in New England experienced one of Mother Nature’s many shenanigans: a decent-sized snowstorm in October, or “Snowtober.” This isn’t the type of climate we are conditioned to around here. Nevertheless,…
Learning to Celebrate Life in New Ways
I’m still trying to wrap my head around this one: I will be turning 30 at the end of the month. To keep my columns professional, I used a period for that previous sentence.
Small Joys Are Bigger Than They Appear
“So, what’s your silver lining?” a friend asked me one night in late spring. My parents and I had recently decided to go forth and allow outdoor visits again, as long as our guests…
