How to get over the fear of trying a new SMA treatment
Last updated Nov. 10, 2025, by Alyssa Silva
Amid the joy and excitement that come with starting a new treatment for spinal muscular atrophy (SMA), I’ve learned that some moments can also feel overwhelming and fearful.
It was a Sunday evening in December when I received the news about trying a new SMA treatment. So many emotions flooded me. After once believing a treatment would not be available in my lifetime, I was overcome with a sense of awe and gratitude.
However, that initial reaction quickly gave way to all the what-ifs and fears about what might come next. Despite these unwarranted feelings, I reminded myself that fear of SMA treatment was a natural response and decided to embrace the new journey with full speed ahead.
My first reaction: Facing the fear head-on
My experience with treatment was a bit unique in that I was considered one of the first older adults to be eligible to receive the medication. This led to some fears and doubts as to how my body would respond to something new. After all, while I trusted the results from clinical trials, I didn’t have any SMA peers my age to turn to for advice.
Initially, I was taken aback by these feelings. The day was only supposed to be filled with celebration, gratitude, and overflowing joy; I was not expecting the uncertainty and fear that accompanied it. At times, it felt paralyzing, but I knew that to face my fears, I had to first acknowledge them. I found this to be a critical step in my treatment journey.
Learning as much as I could
Despite dealing with SMA treatment nerves, I remained cautiously optimistic about what lay ahead. So much of my life with this disease has taught me that the unknown is often scarier than reality. With this in mind, I knew doing as much research as possible would help alleviate my fears. The more information I could gather, the more grounded I would feel.
I learned so much at this stage of my journey. First and foremost, it is essential to ask as many questions as you feel necessary. I had a lot of questions in the weeks leading up to treatment. Whether it was an email or a phone call, I didn’t hesitate to reach out to my provider for the reassurance I needed to move forward.
I also did my own research online from reliable sources, including clinical trial data and trusted SMA organizations. Hungry for knowledge, I scoured the internet for anything that would provide clarity and a stronger sense of agency.
While the knowledge I gained during this time didn’t entirely erase my fears, I encourage anyone who is in a similar situation not to omit this step. Don’t be afraid to ask questions. Being as educated as possible allowed me to replace some uncertainties with understanding. This made the leap into treatment feel a little less intimidating.
Focusing on what I could control
Although knowledge may be power, focusing on what I could control was key during this time. For me, this meant focusing on the emotional side of SMA treatment.
Whether it was getting adequate rest, meditating, or taking small moments throughout the day to focus on the things that brought me joy, these small details mattered in a big way.
They allowed me to enter into a headspace that felt more optimistic and less fearful of the outcome. They allowed me to quiet the anxieties in my mind and focus on what mattered most: the potential health benefits a new treatment has to offer.
Reminding myself of the ‘why’
Despite the roller coaster of emotions I experienced on this journey, I never lost sight of why I had chosen to participate in the first place. Through every moment of fear or doubt, a quiet determination within me reminded me of the inner strength I carried to move forward.
Additionally, after decades of muscle weakness, depleted energy, and the daily battle that is living with SMA, I had reached a point where not trying felt scarier than diving headfirst into my fears.
And when I reminded myself of the reasons behind my decision — to hopefully gain more strength, stamina, and a better future — I knew my fears didn’t stand a chance against the motivation I felt.
What I’ve learned from facing my fear
Regardless of your “why,” I hope you never lose sight of the fact that fear often feels bigger before you take the leap.
Looking back, I wouldn’t say that I overcame my SMA treatment anxiety. Instead, I learned to live with it. I quieted that inner voice that fed me doubts and uncertainties and saw all that was possible when I let courage lead the way.
While starting a new SMA treatment may feel insurmountable at times, the fear, questions, and all the hesitations are simply part of the process. They’re not meant to make you feel weak. They’re meant to make you feel human. As you begin to figure this out, you’ll begin to see that fear can coexist with the hope that lies in receiving a new treatment.
As it turns out, overcoming SMA treatment fear doesn’t require you to be fearless. It simply requires you to be brave enough to begin.
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.
