Spinal Muscular Atrophy (SMA) Awareness Month is observed annually in August. SMA impacts approximately 4 people per 100,000 throughout the United States, with 1 in 50 individuals carrying the disease and 1 out of every 6,000 to 10,000 developing SMA.
SMA is a group of genetic disorders characterized by muscle weakness and atrophy, affecting both children and adults. It affects the body's ability to control muscle movements by attacking and destroying the motor neurons, leading to muscle wasting and difficulty moving (including walking, crawling, breathing, head and neck control, and swallowing).
The Patient Perspective
Living with SMA involves navigating daily challenges with the help of medical treatments, adaptive equipment, and a focus on maintaining a healthy lifestyle to enhance quality of life.
Let’s listen to a 51- to 55-year-old woman with SMA describe what it’s like for her to live with this condition and the emotional toll of “missing out on life experiences” because of it.
Decoding the Patient Voice
Understanding the patient voice is at the heart of what we do at inVibe, which we approach holistically by analyzing what is said, how it’s said, and how it sounds.
Focusing on the content and language of the response, this patient vividly exemplifies how SMA affects “every moment of your day” using two extended lists. The first focuses on disparate functional limitations that occur throughout the day, and the second—less fluent—list pivots away from the physical toward the more challenging “emotional toll.”
When presenting these lists, she speaks with a tone characterized by strongly negative emotionality (‘valence’) and decreased excitement (‘activation’), which indicates a mix of resignation to and frustration with how SMA limits her from experiencing life how she wants to.
Overall, this patient’s response highlights not only the physical limitations but also the profound emotional and social consequences of living with a severe neuromuscular disorder and underscores the importance of comprehensive care and support systems that can improve quality of life for individuals with such debilitating conditions.
Simple, Systematic, Scalable
Our Listening Platform makes it simple for patients to speak with us about their experiences in an open and authentic way and easy for you to engage with their perspectives directly.
If you’re interested in hearing from more patients like this one so that you can gain insight into their experiences, beliefs, behaviors, and desires, schedule a demo with us today and see for yourself.