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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If you’ve never shivered at the sound of someone coughing, chances are you’ve never experienced the weight of a respiratory infection. For someone living with SMA, that’s not usually the case. Getting these…
Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did. A common question…
“Please don’t feel sorry for me when I don’t feel sorry for myself.” These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would…
Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into…
Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight. The past few years have been hellish, with one health battle…
Through my experience with SMA, I’ve come to understand the fragility of life. I’ve also come to understand the fragility of my wheelchair. I’ve been using a wheelchair for three decades and…
I couldn’t believe what I was seeing on the news. A tornado had touched down in my home state, Rhode Island, for the fourth time in six weeks. Before these, I’d heard of one…
In the SMA community, we expect to grieve the loss of our abilities, given the nature of this disease. But for me, grief often feels like an ambush. In my three decades…
You wouldn’t know this just by looking at me or the pictures I post on Instagram, but I’m hiding something. I imagine myself and this secret I carry as though it were a…
Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of…
When I was a little girl, there was a period when I frequented the orthopedic surgeon’s office. Back and forth we went, visit after visit, debating whether I should have surgery to put…
My love for the beach has always been passionate yet complicated. Sure, it’s my happy place. The sound of ocean waves crashing into the shore, the peacefulness that envelops me when I reach…
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