How awareness has transformed the SMA landscape

My life has changed drastically since our community began raising awareness

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by Alyssa Silva |

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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 rods in my spine. Though my scoliosis was severe, my orthopedist hesitated at the idea of such a debilitating procedure, given how weak I was with SMA. He wasn’t sure my body could handle it.

Those appointments weighed heavily on my family. Were we making the right decision? Was the risk worth the reward? Would the anesthesia cause further complications? It was the late 1990s, and very limited information was readily available. With so many unanswered questions and so few resources to turn to, we were often navigating uncharted waters.

As a child, I never understood the magnitude of this. I never realized what my parents had to go through to give me the healthiest possible life. It’s hard to imagine that only a couple of decades ago, this situation was the reality for families affected by spinal muscular atrophy.

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The power of awareness

During SMA Awareness Month, I often think back to those years when knowledge of this disease was sparse. I reflect on all the appointments, hospitalizations, and medical equipment my parents used to make decisions and how they relied on hope and faith.

Of course, they had doctors to guide them along the way. But more often than not, medical professionals hadn’t heard of SMA. After all, my diagnosis was defined by a paragraph in an old medical textbook my pediatrician had. For years, it was all my parents had. Still, they did a remarkable job raising me with so few resources.

Fast forward to present day, and information is much more readily available. With the emergence of the internet, social media, nonprofits, and so much more, I see the impact of generating awareness and the role it plays in people’s well-being — not just the person with SMA and their family, but everyone involved in their care.

Awareness creates community, increases support, and reduces the stigma around disability and SMA. It empowers people to advocate for themselves and their health.

Raising awareness is also crucial for increased research funding. I think back to the early days when Audrey Lewis, founder of Cure SMA (formerly known as Families of SMA), went to great lengths to raise awareness and money for her son’s disease, which so few people had heard of in the early ’90s. The strides she made were the catalyst for many breakthroughs and progress achieved over the past several years. And to think it started with her simply sharing information about SMA.

As I celebrate SMA Awareness Month, I think about how vastly different my life was before our community started raising awareness. I think about Lewis and how sharing our stories can drive change. And I’m reminded that awareness is not just a fleeting spotlight, but a beacon that guides us forward.

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.


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