Why I Welcome Children’s Curiosity About My Disability
A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that…
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
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…
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The Challenges of Making Friends as an Adult With SMA
Making friends as an adult is hard. At least, it always has been for me. After all, I’m an introvert. I like keeping to myself. But friendships are important to my…
Multigenerational Living: Why My Unorthodox Living Situation Works
Ed. note: This column was written in collaboration with fellow columnist Halsey Blocher for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at ”…
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,…
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…
