School is out in my area, and summer has officially started! Living with SMA means that my independence is made possible through a network of practical, daily support from friends in my community, and caregiving is…
Problems with swallowing, also called dysphagia, remain a concern for many children with spinal muscular atrophy (SMA) type 1 despite available treatments, a real-world study reports. Researchers examined swallowing in patients with SMA…
I sometimes experience an unexpected blast into the past. For example, if the weather has just the right balance of sunshine and crispness, I’m back in elementary school, around Thanksgiving, playing chase with…
Blood levels of tiny cell-released particles called extracellular vesicles (EVs) could serve as a tool to track disease progression and treatment response in people with spinal muscular atrophy (SMA), a small study suggests. Researchers discovered that these…
I’m at a point in my life where I’m highly convinced I’m going to die single and a virgin. That may sound dramatic to some people, but for many disabled adults, it’s a…
This article was provided by our partner, the Muscular Dystrophy Association. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not…
Two previously unknown large deletions involving the SMN1 gene, whose loss is the primary cause of spinal muscular atrophy (SMA), were identified in two women with a mild form of the disease using long-read whole-genome…
Like most humans in the world, I do not like to cry in front of other people. My life with SMA does not allow me a lot of grace to conceal my physical weaknesses and vulnerabilities. It…
Note: This column describes the author’s experiences with Cymbalta (duloxetine), Prozac (fluoxetine), and Celebrex (celecoxib). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. After months…
Note: This column describes the author’s own experiences with fentanyl and other pain medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “You really know pain,…
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