Columns

I got out of my van at the hospital for what felt like the millionth time that month, and I could hear the deafening sound of a helicopter landing above me. Though hundreds of feet above, its whirling sound ricocheted off the buildings and echoed down below. The sound…

Newborn screening for spinal muscular atrophy (SMA), coupled with early access to disease-modifying therapies, can improve the likelihood that children with the disease will be able to walk, a new study suggests. Also, fewer patients in the newborn screening group tended to require ventilatory or feeding…

There are a few things in life I take refuge in, such as faith and family, which offer safety. My ventilator also makes me feel protected by giving me more breath support when I am sick and keeping sleep apnea at bay. Then there’s the all-important sleep. Sleep has…

Treatment with the muscle strengthener pyridostigmine may reduce patient-reported fatigue among people with spinal muscular atrophy (SMA), results from a small clinical trial suggest. Still, the treatment failed to ease motor fatigue and improve motor function compared with a placebo — which were the main goals of…

White, male, formerly nondisabled: That was the typical profile of an explicitly disabled character in pop culture when I was a kid. Even then, I can only recall two who made an impression on me. The first was Charles Xavier, also known as Professor X of the “X-Men” movies.

When I was younger, I enjoyed the hyperactive nature of the teacup ride at Disney World. My mom hated it, but my dad was willing to accompany my siblings and me on this headache-inducing extravaganza. Spinning around inside a giant teacup from “Alice in Wonderland” was enough to entertain…

Second in a series. Read part one. As a kid, I participated in the time-honored tradition of learning about love through movies. I knew better than to fall for the more extravagant depictions. But that didn’t stop me from putting my own spin on things. By the time…

One glance at my medical records will very clearly tell you that I’m not exactly healthy. The information contained within my chart includes a primary diagnosis of spinal muscular atrophy type 1 and a list of medications prescribed to treat that disease and manage its…

I came close to starting my first-ever Facebook war recently. Well, not exactly. My conscience quickly kicked in and my mother became my sounding board instead. After reading a comment from a stranger on the internet, I had a lot to say. Sadly, I’m almost immune to the negative…

“I haven’t had cancer since I was 11 months old!” our cheery granddaughter recently proclaimed. Clara turned 7 at the end of December. She’s witty, imaginative, spunky, highly entertaining, candid, cute, and sharp. Sometimes, though, her facts are a bit skewed. She’s never had cancer. …