Combating 3 misconceptions about living with SMA
Our disease is too poorly understood, but we can clear things up with education
While living with SMA, I’ve been on the receiving end of many people’s misconceptions about the disease. To an extent, I understand their lack of awareness; there are many diseases and conditions that I don’t know about, either. But there’s a fine line between not understanding the complexities of an illness versus making judgments or assumptions based on limited knowledge.
With that, I’ve learned that educating others about SMA is just as important as bringing attention to the misconceptions that I, along with many others in this community, encounter. Today, I’m using this column to dispel three misconceptions I’ve most often faced.
Misconception #1: SMA is a one-size-fits-all diagnosis.
I experience this misconception often when I’m meeting doctors for the first time and have to explain my case to them. Explaining decades of medical history is no easy feat. But what I find most perplexing is how these doctors are quick to put me in a box, so to speak. They take what they know about SMA, if anything at all, and make assumptions about my diagnosis.
The fact, however, is that SMA is different for everyone. There are even outliers like me who really shake up the diagnosis. On paper, I was diagnosed with type 1 at 6 months of age. But some medical records state I have “type 1/2.” That’s because of how my SMA presents itself. I don’t quite fit the definitions for type 1 or type 2, but fall somewhere in between.
That’s the complicated beauty of living with SMA. Everyone who has it is affected in a different way. While the community bands together to help one another and share lived experiences, no two diagnoses are alike. And outside of the SMA community, not many people recognize this.
Misconception #2: SMA affects cognitive function.
According to the Muscular Dystrophy Association, SMA is a disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement. In other words, it doesn’t affect cognitive function. Yet I’m constantly having to prove myself and my intelligence to those who don’t know me or my condition. It’s incredibly disheartening.
My disease doesn’t give someone an open invitation to assume I’m cognitively impaired simply because I’m in a wheelchair. Unfortunately, many people don’t see it this way, and as a result, I’m treated differently.
Misconception #3: Treatments are a cure.
In 2010, my nonprofit organization started hosting an annual fundraiser to support clinical trials. At the time, there was nothing available to to treat those with SMA. Six years later, the U.S. Food and Drug Administration approved Spinraza (nusinersen), the first disease-modifying therapy (DMT) for SMA in the United States. I still remember my joy upon hearing the news. Hope had finally become a reality.
With that, however, came the misconception that the community had finally received its long-awaited cure. Many people approached me asking what was going to happen to the fundraiser now that a treatment was available. And my answer was simple: nothing. A treatment isn’t a cure. It may improve quality of life or reduce certain symptoms, but it can’t eradicate the disease. And that’s OK. There are still medical advancements to be made.
As of this month, three DMTs have been approved for SMA, with many trials in the pipeline. These treatments are rewriting history, and I’m thankful to be a part of it. I’m thankful for all those who paved the way to get to this moment in time. Nevertheless, I still continue to fight every single day.
SMA is an intricate disease that I don’t expect everyone to understand. But learning to dispel some of the misconceptions can lead to better education. It can lead toward more understanding, with the hope of creating a more inclusive world in the process.
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.