Remembering My Spinal Fusion Surgery...When I was younger, I had a 90-degree curve in my spine due to scoliosis from spinal muscular atrophy (SMA). My torso...reactionscomments
What Is a Tracheostomy?...Weak chest muscles can make breathing difficult for children with spinal muscular atrophy (SMA). This is because their lungs may not fully...
Cough Assistance for Spinal Muscular Atrophy...Coughing is an important way to clear mucus and other secretions from our airways. This helps prevent the airways from getting blocked...
Zolgensma (onasemnogene abeparvovec-xioi)...In 2019, the US Food and Drug Administration (FDA) approved Zolgensma (onasemnogene abeparvovec-xioi) to treat children under 2 years old with spinal...
Nissen Fundoplication Surgery...A surgical procedure called Nissen fundoplication can treat acid reflux in people with spinal muscular atrophy (SMA). Acid reflux happens when stomach...
Spinraza (nusinersen)...In 2016, Spinraza (nusinersen) became the first drug approved by the US Food and Drug Administration (FDA) to treat children and adults...
Surgery and SMA...Treatment of spinal muscular atrophy (SMA) focuses on maintaining motor function, improving quality of life, and preventing complications. This usually includes physical...
Physical and Occupational Therapy for Spinal Muscular Atrophy...Muscle weakness is the most obvious symptom of spinal muscular atrophy (SMA). It varies for every person, depending on disease severity. How...
Who Treats Spinal Muscular Atrophy?...People with spinal muscular atrophy (SMA) require ongoing, specialized care from a team of doctors and other health specialists. The team is...
Forced Poverty in the Disability Community...From an early age, individuals with disabilities face a unique set of financial challenges. For me, these challenges began at 16, a...reactionscomments
Buying My First Home...After almost 2 years of searching and being outbid, my dream of becoming a homeowner has come to fruition. I would imagine...reactionscomments
Challenges of SMA and Its Progression...Living with a chronic condition like spinal muscular atrophy (SMA) can have significant social and emotional impacts on individuals and their families...reactions1comment
Can Someone Really Predict Life Expectancy?...I was about 4 years old when my parents became concerned about my physical well-being. My younger brother was becoming stronger than...reactionscomments
Speech Therapy for Children with SMA...I am a speech pathologist. My daughter had spinal muscular atrophy. One of my daughter’s needs was speech therapy services. Since I...reactionscomments
Complications of Spinal Muscular Atrophy: Urinary Incontinence...Children with spinal muscular atrophy (SMA) have progressive muscle weakness due to defective motor neurons in the spine. This can lead to...
Children and Spinal Muscular Atrophy...Spinal muscular atrophy (SMA) is a long-term progressive disease that causes muscle weakness. This affects each child with SMA differently. Children often...
School Accommodations and SMA...Children with spinal muscular atrophy (SMA) often succeed in school. However, certain physical limitations may prevent them from participating in all academic...
SMA and Health Insurance...People with spinal muscular atrophy (SMA) often face high healthcare costs. These costs usually come from hospital visits, medical equipment, and prescription...
Letting Go of a PCA...Like any other job in this world, being someone’s personal care assistant just isn’t for everyone. But unlike every other job, this...reactions4comments
Mixing Advocacy With Travel in Washington, DC...Guess what I did? I took a trip to Washington, D.C., to advocate for a cure for spinal muscular atrophy (SMA) on...reactionscomments
