-
1 week ago | 
smanewstoday.com | Steve Bryson |Katherine Poinsatte |Marta C. Figueiredo |Sherry Toh
Three men with late-onset spinal muscular atrophy (SMA) undergoing treatment with the approved therapy Evrysdi (risdiplam) were able to conceive with their partners, a case series reported. None of the pregnancies were planned, and the researchers noted there were no missed treatment doses. Among the three, one pregnancy was voluntarily terminated, while the other two men’s partners gave birth to healthy babies.
-
2 weeks ago | 
smanewstoday.com | Sherry Toh |Marisa Wexler
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I hadn’t meant to fall asleep. “I’m going to close my eyes for just a few seconds,” I told myself. “And then, I’m going to write.”The next thing I knew, it was two hours later. I awoke in shock. How had two hours in the hospital passed without my knowledge? Visitors for other patients were around.
-
4 weeks ago | 
smanewstoday.com | Sherry Toh |Marisa Wexler |Kevin Schaefer |Steve Bryson
Last in a series. Read parts one and two. I bought shoes I wasn’t sure I’d wear. That seems like a trivial statement, I know. Except the shoes cost 119 SGD ($89) including shipping, and I hadn’t had any income for six months at the time of purchase. Oh, and let’s not forget that I was in the hospital for vomiting and severe, chronic spinal pain.
-
1 month ago | 
smanewstoday.com | Alyssa Silva |Steve Bryson |Sherry Toh |Brianna Albers
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement recently when they came across a large trash bag filled with some of my stuffed animals. Right on top was a stuffed horse I hadn’t seen in decades. The memories it still held sucker-punched me right in the gut and transported me back in time to a moment when life felt so heavy.
-
1 month ago | 
smanewstoday.com | Sherry Toh |Kevin Schaefer |Ari Anderson
Second in a series. Read part one. My mum likes to say that my home-care nurse is like a second mother to me, and I’d have to agree. Ever since my SMA care was transferred from a pediatric to a general hospital after I turned 18, my home-care nurse, who is assigned to me for things like home checkups, has been an emergency contact.
-
1 month ago | 
smanewstoday.com | Brianna Albers |Lindsey Shapiro |Alyssa Silva |Sherry Toh
Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe. My neurologist catches me up on all the books he’s read recently. My complex care doctor puts me at ease with his sunny smile and easygoing demeanor. My wheelchair guy (for lack of a better term) jokes good-naturedly with my dad about manly things like nuts, bolts, and Allen wrenches.
-
1 month ago | 
smanewstoday.com | Helen Baldwin |Lindsey Shapiro |Sherry Toh |Halsey Blocher
The revelation that my husband, Randy, and I were becoming newborn parents again called for a comprehensive to-do list. Our other children, Matthew and Katie, were in elementary school. With no intention of needing baby items again, we’d kept nothing. Katie, then 7, ecstatically helped me rectify that dilemma, and soon we were ready!Jeffrey arrived on May 18, 1997. We sailed along, going with the flow impressively.
-
1 month ago | 
smanewstoday.com | Sherry Toh |Kevin Schaefer |Steve Bryson |Lindsey Shapiro
First in a series. “All right, I have to go. Bye, Sherry,” my then-new pain specialist said. “I hope I won’t see you for a few months.” That was a few days after he’d administered a caudal epidural nerve block for my chronic neuropathic pain, almost a month after we’d first met in the hospital’s neurology ward. Finally, we thought, a potential solution for getting me back, at least in part, to what my life was like before debilitating pain kept me in bed.
-
Jan 17, 2025 | 
smanewstoday.com | Halsey Blocher |Lindsey Shapiro |Sherry Toh |Kevin Schaefer
It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I have on average each year, but I quickly lose count. Although I spend much more time with my medical team than healthy people do, that’s just routine for those of us living with SMA.
-
Dec 20, 2024 | 
smanewstoday.com | Halsey Blocher |Kevin Schaefer |Sherry Toh
Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can relate to. I’ve found connections with Belle’s love for books, Moana’s bond with the sea, a courageous song by a modern depiction of Jasmine, and the empathetic heart they all share.
