Why I’m Sticking to Spinraza for Now
It’s officially August, which is kind of hard to believe. Nonetheless, many people in the SMA community have anticipated this month for quite some time. Not only is it SMA…
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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What Working at Bionews Has Taught Me
This is going to be a tough truth to admit, mostly because I’m still a little embarrassed by it all these years later. But, here we go. When I was originally offered this role…
Teaching Children About My Disability
It’s no question that children are curious little people, and as someone in a wheelchair, I have often witnessed their curiosity. If I were to guess, I’d assume disabilities aren’t something they’ve seen in…
I Hope Telemedicine Is Here to Stay
As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as these times, I have…
Recent Health Issues Leave Me Guessing
For the past few months, I have been experiencing some debilitating health issues. I’ve spoken with my doctors. I’ve tried different medications. And while as a team, we have figured out ways to give…
My Own Kind of Digital Detox
Digital detoxes are all the rage these days, and for a good reason. If you didn’t already know, a digital detox is time spent disconnecting from all devices with a…
Why I’m Hesitant to Take New Medications
There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks…
Finding Unexpected Solace Amid Social Isolation
The other day, I read one of my old columns and thought to myself, “Honey, if you only knew what was to come.” My January column, “Please Stop Glorifying Being…
I Need to Approach Stress with a Different Mindset
My body has never handled stress well. Come to think of it, does anyone respond well to stress? Typically, my body reacts to stress in the form of gastrointestinal issues.
Letting Love Light My Way Through the Unknown
I was scrolling through Instagram recently and found myself growing increasingly bitter about what I saw. People were congregated on beaches, packed like sardines in bars, and carrying on with their lives as if…
Chronic Ear Infections Put a Damper on Life
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque,…
Celebrating My Zebra Spots on Rare Disease Day
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my…
