Volunteering has given me more joy and meaning than I ever imagined possible. Living with spinal muscular atrophy (SMA) means I can’t move my own body, but that hasn’t stopped me from finding ways to move others. Whether supporting disaster relief efforts or creating meaningful moments for hospice patients,…
Being Resilient — Jasmine Ramos
Jasmine Ramos is a junior at Millersville University of Pennsylvania. As a student involvement assistant at her community college, she’s managed the school newsletter, earning her the affectionate title of “newsletter queen.” Diagnosed with SMA type 1 at 6 months old, Jasmine hopes to connect with others through her column, sharing personal experiences with a rare disease. Between studying and crafting articles, she enjoys cozying up with a blanket while engrossed in psychological thrillers or true crime TV shows. Her journey reflects resilience and a commitment to raising awareness about lesser-known conditions.
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I’m at a point in my life where I’m highly convinced I’m going to die single and a virgin. That may sound dramatic to some people, but for many disabled adults, it’s a thought that quietly lingers in the background more often than anyone realizes. We live…
As depression and anxiety started to affect my outlook on life, I noticed how these challenges clouded even the simplest moments. Depression’s weight often made it hard to see beyond a day’s struggles, while anxiety wrapped every action and interaction in a shroud of what-ifs and what-nows. Seemingly a…
Since I have spinal muscular atrophy (SMA), my birthday always demands a grand celebration. And this year was extraordinary. Not only am I closer to bidding farewell to my 20s, but I also had the chance to journey back to my beloved hometown, New York City, for an…
As those of us with spinal muscular atrophy (SMA) know all too well, people with disabilities often face a slew of assumptions and misconceptions. To improve awareness and understanding, I want to address five of the most prevalent myths I’ve encountered, especially as I’ve become more visible and engaged…
The digital age has transformed how we connect, empowering people like me to engage with the world from anywhere. My tech obsession ignited around age 14 with the thrill of my first Nintendo DSi. Despite needing creative positioning for myself and my device, I was instantly hooked, often…
As another hot summer gets underway, I’ve been reflecting on two pivotal events that took place a year ago this month. These memories elicit feelings of joy whenever I’m feeling down in life with SMA. On June 11, 2023, my summer kicked off with a bang. My best friend,…
“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.” — Amy Li My sister, Jessie, and I have always shared the closest bond among my four wonderful siblings. Growing up, she understood that I couldn’t walk…
Being diagnosed with a progressive neuromuscular condition like spinal muscular atrophy (SMA) often brings a range of physical challenges that significantly impact both the people with the disease and their loved ones. One of these challenges is scoliosis. According to the American Association of Neurological Surgeons,…
Those of us who live with a disability that severely limits our motor skills find ourselves continually depending on others for assistance. In addition to essential daily tasks, we need assistance with seemingly mundane activities like painting one’s nails or trimming a beard. We rely on family members or…
Memories wield immense power in the recesses of the mind. They can evoke varying emotions, from exhilaration and delight to sorrow and profound grief. Countless memories regularly swirl through my consciousness. Yet, as I pondered ideas for this column, one memory persisted: my recent graduation from Harrisburg Area Community…
My medical journey began with challenges but has evolved into a story of resilience and hope. Born on a sweltering August day in New York, I arrived as a gift to my mother, resembling her in several ways, including as a fellow Leo. The first six months of my life…
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