I recently wrote about how I’ve been in the process of transitioning from a children’s hospital to an adult hospital. It’s meant saying goodbye to the place that knew my medical history better than anyone else, that helped keep me alive through countless challenges, and that understood my…
Discussion
When I graduated from college in 2005, I received a special gift: a large whiteboard to hang on the wall. It had 38 pictures on it showing many of my adventures with SMA and other key moments I’d had over the years. Those pictures have remained on my wall…
Discussion
I don’t talk to my ex anymore. For the sake of this column, I will have to let her know about it as a courtesy. But as far as a daily choice goes, it’s not one I make anymore. Readers who’ve kept up with my column in the last few…
Discussion
The migraine medication flunarizine may help protect nerve cells in spinal muscular atrophy (SMA) by correcting abnormal levels of microRNA, small molecules that help regulate gene activity. Researchers identified widespread microRNA abnormalities in cells and in the spinal cords of SMA mice, particularly at the earliest stages of disease.
Discussion
My caregiver held the toothpaste tube in both hands, meticulously squishing it flat from the bottom all the way up to the nozzle. I laughed: “It’s OK, I have a whole new tube ready to go in the closet.” She shook her head and gritted her teeth as she forced…
Discussion
Healthcare professionals who specialize in managing spinal muscular atrophy (SMA) are prone to putting off tasks related to patient care, likely because they are stressed and exhausted, a study found. A research team in Spain found a strong relationship between burnout and procrastination, suggesting that professional exhaustion may drive…
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