Spotlighting Spinal Muscular Atrophy Community Members
In observance of Spinal Muscular Atrophy (SMA) Awareness Month in August, we connected with members of our SMA community to showcase some important insights about life with SMA. Discover their responses below:
Liz Persaud
“SMA is considered a childhood neuromuscular disease, but there are many of us living well into our 40s, 50s, 60s and longer. As time goes by, science and technology are making our lives easier every day and extending the possibility of a longer life. However, those of us that are older with SMA encounter other medical obstacles, just as those do that don’t identify as disabled... As a direct result, our self-advocacy skills become stronger and louder. We aren’t going anywhere and it’s about time the medical field and the rest of the world recognizes that!”
Ty Dykema
Ty Dykema is a freelance visual artist in Grand Rapids, Michigan. He says that although SMA can be “an incredibly brutal thing to live with,” it also provides him with a beautiful way to connect with others. “Learning to see my needs as opportunities for human connection changed the way I see myself and my community for the better,” he said.
Jensen Caraballo
“Universal Design not only benefits individuals with disabilities, but it also enhances the quality of life for everyone, creating a more inclusive and equitable society,” he said. “By embracing these principles, we can eliminate many of the barriers that currently hinder our full participation and engagement in various aspects of life. It's a step towards a world where everyone can thrive and contribute their unique perspectives and talents.”
Michaela Hollywood
Michaela wants others to know about the unique intersections of mental health and physical disability. “The one thing I think we all neglect is the mental health impact of needing to have almost constant companionship,” she said. She also pointed out the stress caused by care arrangements being unstable, due to illness or other situations.
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Ali Ramos
“Lived experience is oftentimes greater than a formal education,” she said. “The inaccessibility of the mental health field is prevalent now more than ever.”
When asked what would make life more accessible for her, Ali emphasized the need to be able to travel by plane without fear of her wheelchair or body being hurt. “I can't even imagine getting to fly somewhere safely and comfortably while remaining seated in my wheelchair,” she said. “That would be amazing!”
SMA and the National Paralysis Resource Center
Despite common perceptions, the term paralysis applies to more conditions than just Spinal Cord Injury. The National Paralysis Resource Center uses the definition of paralysis provided by our funder, the Administration on Community Living: any sort of mobility impairment. This means that conditions like Spinal Muscular Atrophy fall under the paralysis umbrella, and that people with SMA qualify for services through the NPRC.
Learn more by visiting our page on Spinal Muscular Atrophy and exploring resources available here.