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…
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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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…
Learning to Navigate the World in My Permobil F3
The SMA News Today Forums heard it first, but I’d like to introduce you to my brand new Permobil F3 wheelchair. Her name is Rizzo, and…
On Being in Tune with My Body
All my life I’ve been freakishly in tune with my body. It sounds like a great quality to have, right? I’ve always been hyperaware of my symptoms and can spot when something in my…
Please Stop Glorifying Being Homebound
As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight…
