I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work. Over the years, this machine has become my trusty companion. I…

Researchers in Hong Kong have shared a case report about how they were inspired and humbled by a teenage girl with spinal muscular atrophy (SMA) who got through a difficult hospital stay while maintaining a hopeful spirit and never losing sight of her goals. “Although the life of children…

I’m about to give myself credit where credit is due: I didn’t freak out for several months. I have undiagnosed, but undeniable, health anxiety. So, I was surprised by my reaction to a recall announced last June by Philips Respironics of 13 respiratory machines, including the BiPAP machine I’ve used…

Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What if I told you that we would be permanently stuck on ground level, going nowhere in life, without all the heavy…

Need for ventilation support is common among children with spinal muscular atrophy (SMA), and those who are older and with more abnormal breathing seem to be at greater risk, an Australian study suggests. Researchers have now defined a range of values for breathing function that may tell which…

Continuous simulation training for family caregivers of children with spinal muscular atrophy (SMA) leads to improved assistance at home and better clinical outcomes, according to new research. The study, “An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA),” appeared in the…