Why Participating in Research Studies Is Important to Me
For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study,…
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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Why My Journey With Disability Pride Isn’t Linear
Even though I’ve been disabled all my life, I had never heard of Disability Pride Month until I scrolled past someone’s Instagram post last July. I guess that’s the beauty of social…
Actually, My Disease Does Define Me
Recently, someone I know commented, “Alyssa doesn’t let her disease define her.” I absolutely understood where they were coming from. After all, I have always been determined. I have always been that girl who…
Thanks to SMA, I’ve Acquired a Wealth of Medical Knowledge
If I had to choose the top three places I frequented prior to the pandemic, they would be the local coffee shop, Target, and Boston Children’s Hospital. Thankfully, I mostly frequented the hospital…
Navigating the Past Year Without Caregivers Has Been Challenging
I’ll never forget March of last year when the pandemic began. Many of us didn’t realize how serious it was, and we didn’t know what to expect, how to handle it, or what we…
I’m Remembering to Prioritize My Mental Health
During the height of the pandemic last year, a steady influx of people often reached out to me to check on my health. It was quite admirable. Friends, family members, and even people I…
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…
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.
