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NEWS

Living as a Superhero

Posted on March 02, 2022
Article written by
Lisa Velez-Batista

As we all know, spinal muscular atrophy (SMA) is a neuromuscular disease caused by a mutation in the survival motor neuron gene 1 (SMN1). In SMA, this mutation is in the gene responsible for a protein that’s critical to the function of the nerves that control normal muscle movements. Without the production of SMN1, nerve cells die, causing muscles to become increasingly weaker.

When I was first diagnosed with SMA 3, I was devastated to learn that there was no cure or treatment and that I would continue to lose strength. The SMN1 mutation made climbing stairs my greatest obstacle. I was rendered weak and helpless, like Superman in the presence of kryptonite. I was unaware that I would develop another type of SMA — super mutant abilities — that would aid me in navigating through life.

People with SMA have great resources to combat their weaknesses. Our physical limitations are no match for our drive and inner strength. We find ways to overcome the hurdles that are placed before us. We do so by tapping into our super mutant abilities.

Evolving To Overcome

We are continuously mutating to acclimate to the world around us. Like the X-Men, the mutation that sets us apart also gives us powers some people never develop. We learn to become self-advocates at a young age. We acquire the ability to find our place in a world that wasn’t made with us in mind. We mourn our losses and accept our new limitations. We are constantly learning how to do things differently as we adjust to our new levels of normal. We fight to stay positive as we battle against anxiety, depression, and feelings of inadequacy.

We do all of this by being grateful for our supporters and the abilities we still have. It isn’t easy, but we accomplish feats that others take for granted on a daily basis. The SMN1 mutation has weakened our bodies, but it’s no match for our super mutant abilities that fuel our determination and desire to find success and happiness. People with SMA live as superheroes every day of our lives.

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The Superhero’s Creed

As superheroes, we carry a responsibility to benefit others. We do this by being examples of diversity and strength, leaders chosen to teach acceptance and compassion. As the saying goes, “The highest form of knowledge is empathy, for it requires us to suspend our egos and live in another’s world.”

Every person has weaknesses and superpowers. The key is to use our strengths to overcome our weaknesses. That includes asking others for assistance when necessary — because even superheroes need help occasionally.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

All updates must be accompanied by text or a picture.
Lisa Velez-Batista is a member and ambassador on mySMAteam. Learn more about her here.

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