When I was born 31 years ago, spinal muscular atrophy (SMA) was a very different disease than it is today. There were no approved treatments. No gene therapy. No medication designed to slow its progression. For those of us born before the era of SMA treatments,…
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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When someone asks me what a good day looks like, my answer probably isn’t what they expect. It doesn’t necessarily involve accomplishing a long list of tasks, doing everything independently, or having a day when my disability doesn’t get in the way. For me, a good day is much simpler.
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…
Some losses don’t give you time to prepare. The sudden passing of Eric Dane, a Hollywood icon who couldn’t escape the ugly grip of amyotrophic lateral sclerosis (ALS), is one of them. It’s the kind of news that doesn’t just make you sad. It unsettles you. It pulls…
SMA doesn’t usually make headlines unless the person affected is famous. When Jesy Nelson, former lead singer of Little Mix, shared that her newborn twin daughters had been diagnosed with SMA, global attention followed. Entertainment outlets covered the story widely, social media filled with messages…
Some seasons of growth don’t ease their way in; they break you open just enough to let the light shine through again. I’m in one of those seasons now, a chapter filled with reflection, honesty, and tenderness I’ve avoided for years. My disability doesn’t define me, but living with…
When I was younger, the idea of me turning 30 felt like a distant dream for me and my family. Living with spinal muscular atrophy (SMA), I was constantly reminded by doctors, statistics, and even the quiet fears of those around me that my future might be shorter, narrower,…
I live with spinal muscular atrophy (SMA), a condition that, in my case, makes it impossible for me to move my body on my own. But that’s not where my story begins — or ends. People often call me strong, but they rarely see the whole picture. They don’t…
Living with spinal muscular atrophy (SMA) means my body doesn’t always warn me before it spirals into crisis. One minute, I’m sleeping peacefully. The next, I jolt up, gasping for air. My ventilator blares, its alarm shrill and relentless. Another mucus plug. Again? Someone will be here soon.
For most of my life, I felt like I had to shrink parts of myself to fit into a world that wasn’t built with me in mind. Living with spinal muscular atrophy (SMA) means navigating not just physical barriers, but also the emotional weight of constantly feeling different. I…
When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping the next doorway isn’t too narrow, the next curb isn’t too high, and the next space…
A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That moment stuck with me — not because I was surprised, but because…
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