Luis, who has SMA Type 2, shares his thoughts for SMA Awareness Month 2022:

August is SMA Awareness Month 2022!

For those of you who don’t know, Spinal Muscular Atrophy is a rare, progressive, genetic neuromuscular condition, that has a 1 in 4 chance of occurring in each pregnancy when both parents carry the genetic mutation that is present in 1 in 40 people.

SMA has been part of my life for 37 years now, I have had ups and downs in my life, just like everyone else. I have had to undergo surgeries, just like everyone else. I went to school, just like everyone else. I moved out from home, just like everyone else. I started working on my career, just like everyone else…

I think there is still a lot of misconception in society that SMA robs everyone of life, opportunities to succeed, and to participate in the community. For me it is far from that! It is a condition that we have, not a defining trait of who we are… There is amazing work being done for the treatment of the condition, there are many successful individuals with SMA, trailblazers in advocacy for the condition, and organisations that are involved at the forefront and in the background.

My fellow SMAers, onwards we roll to whatever makes us happy, achieve our goals, and live our lives THE WAY WE WANT TO!!!

#spinalmuscularatrophy #SMAUK #unstoppable

First published: August 2022