Finding joy in being there for someone who is there for me
I wiped away tears of happiness and hugged my friend Andrea. She was engaged to be married and had just asked me to be her maid of honor. Of course, I said yes with all…
Columns
Introducing my latest diagnosis: Arthritis of the right hip
You know you’re in trouble when your orthopedist uses words like “sclerosis.” After several excruciating months of pain, I was exactly where I needed to be: Gillette Lifetime Specialty Healthcare in St. Paul,…
England expands newborn screening to detect SMA before symptoms appear
England is rolling out newborn screening for spinal muscular atrophy (SMA), which will allow all babies born in the country to be tested for the rare genetic disease shortly after birth. According to a government…
My medical devices aren’t an invitation for people to stare at me
“Alyssa, does this look weird?” my mom said as she popped her head and chest out of the bathroom door. We were getting ready to go to a parade in 100 F heat and humidity.
Study links metabolic flaws in spinal muscles to scoliosis in SMA
The spinal muscles of spinal muscular atrophy (SMA) patients who also have scoliosis show abnormalities in molecular activity, particularly in biological processes that cells use to metabolize sugar molecules and protein building blocks, according to a…
Diagnosis Day packs a different kind of punch 29 years later
My husband, Randy, and I moved to the North Carolina mountains in the closing hours of 1995. Although our children, Matthew and Katie, who at the time were 10 and 7, respectively, were initially unenthusiastic about…
Pioneering SMA champion to be honored for her disability advocacy
A woman with spinal muscular atrophy (SMA) who has become a champion for those living with disabilities — as an author, a podcast host, and a vice president of the Muscular Dystrophy Association (MDA) —…
How a national parks pass granted me access to new adventures
July is my favorite time of year to be active, travel, and chase adventures. Like many people with SMA, cold weather is hard on my body — my muscles get tense, my fingers and toes…
Signs and symptoms of SMA
Melissa Wright, MD, PhD, discusses common signs and symptoms of SMA, including proximal muscle weakness, changes in gait, falls, tremors, and muscle fasciculations. What are the signs of SMA muscle weakness? The post Signs…
Recognizing early signs of adult-onset SMA
Melissa Wright, MD, PhD, discusses early signs of adult-onset SMA, including progressive fatigue, weakness, falls, and hand tremors. When should fatigue or finger tremors prompt a closer look for SMA?…
Recent Posts
- Finding joy in being there for someone who is there for me
- Introducing my latest diagnosis: Arthritis of the right hip
- England expands newborn screening to detect SMA before symptoms appear
- My medical devices aren’t an invitation for people to stare at me
- Study links metabolic flaws in spinal muscles to scoliosis in SMA