Dear Reader, I don’t know who you are. Perhaps you’re a doctor, someone working in healthcare, someone who reviews funding applications, or simply someone who happened to find this letter. My…
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SMA Awareness
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Knowing Isn’t the Same as Living It I’ve always known my disease was progressive. When you grow up with Spinal Muscular Atrophy (SMA), words like deteriorating and progressive become part of…
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“For most of my life, growing older was never something I feared. It was something I wasn’t sure I would get the chance to do.” In a world that often celebrates…
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It Was “Just Flu” In April 2024, I thought I had flu. If you live with Spinal Muscular Atrophy, you know that sentence is never casual. But I’ve had bronchitis before.…
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There’s a part of this journey I don’t think many people talk about. Not the fear, not the uncertainty, not even the clinical science — but the isolation that comes with…
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Blog SMA AwarenessWhen Awareness Meets Reality: Reflections on SMA, Privilege, and the Power of Early Diagnosis
At KmotivationSA, I use my lived experience to spark meaningful conversations, challenge systems, and champion change. I write this reflection not only as someone living with spinal muscular atrophy (SMA), but…
