Happy Spinal Muscular Atrophy Awareness Month!
SMA is a genetic, neuromuscular condition that impacts voluntary muscle movement. There are four types of SMA with varying levels of severity – when I was diagnosed at 16 months, SMA types were determined by onset of symptoms and thus diagnosis age. Now, with the ability to diagnose in utero, types of SMA are determined using different guidelines, including specific gene details and impact of symptoms.
This isn’t the only way lives have changed as technology progresses. Although it was once considered a childhood disease, people with SMA (like myself!) are now living longer thanks to the advancements in technology and treatments.
Like all people, we live varied, unique lives – some of us use wheelchairs, some of us walk. Some of us want a cure for our condition, others want a more accessible world (many of us want both). We are artists, scientists, therapists, lawyers, performers, teachers. We are Content Specialists and Directors of the Outreach and Education Department of the National Paralysis Resource Center!
As part of SMA Awareness Month, we’re featuring Spotlights of Community Members with SMA, read our full blog here. I asked individuals to submit answers to three questions – find my own answers below!