Reflecting on the SMA treatment decision that changed my life

This column describes the author’s own experiences with Spinraza (nusinersen). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

When trying to decide on a topic for this week’s column, my procrastination got the best of me, as it usually does. And before my brain even registered what I was doing, my finger was tapping the Facebook app. I told myself I was going to find inspiration there, which was a pathetic excuse for me not feeling disciplined enough to write. This time, however, it paid off.

Before I fell deep into the black hole of scrolling through my news feed, Facebook showed me a memory that took me by surprise. It was a picture of me in a hospital exam room from seven years ago. And with it, I’d shared this text:

“​For the past couple of weeks, I’ve grappled with the idea of writing this post. A part of me wanted to keep this journey private, and only share it [with] those I kept close to me for I didn’t (and still don’t) know what’s to come in the future. But, the more I thought about it, the more compelled I felt to write about this great unknown.”

The great unknown I was referring to was Spinraza (nusinersen). And the picture I’d taken was immediately following my first injection.

So many emotions resurfaced when I saw that girl staring back at me. She was scared and unsure of what was to come. But she was more hopeful than ever. And somehow, that was all she needed to take the biggest leap of faith of her life.

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When I received the call that I was eligible for Spinraza, it had yet to be tested on adults. It hadn’t even been approved by the U.S. Food and Drug Administration (FDA) to treat those of us with SMA. Instead, my neurologist had asked me to be a part of a treatment program through which the FDA had granted early access to the drug. However, there were a few caveats.

He spoke at great length about how Spinraza hadn’t been trialed in adults my age before. So there was a chance this treatment would provide no benefit to me. He also was wary about the administration of the drug, which involved a lumbar puncture. Because of my severe scoliosis, the procedure’s success was unknown. Nevertheless, when asked if I was willing to give it a try, my answer was a resounding yes.

Though I didn’t know it yet, that was the best decision I ever made. When I embarked on this journey, I was afraid to tell the world out of fear that Spinraza wouldn’t be effective for me as an adult living with SMA. I was afraid to let the community down. Of course, the outcome was out of my control.

However, being the pioneer for other adults with SMA felt daunting at times. In my mind, it had to work for me, because if it worked for me, then it would work for us.

After a few Spinraza injections, though, my leap of faith began to pay off. My stories went from navigating through unknowns to newfound strength. My doctors were growing more hopeful for the adults who’d soon have their chance at this treatment. And in late December 2016, Spinraza finally was approved by the FDA to treat children and adults with SMA. Life felt like a whirlwind in the best possible way.

It’s hard to believe that I’ve been receiving Spinraza for seven years now. Seeing that image on Facebook reminded me of a time when all I could do was hope for an SMA treatment like this. At the time, my body was weakening, but not as fast as my spirit. I didn’t believe I’d have access to a treatment in my lifetime. But on Dec. 15, 2016, that hope became a reality.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.