My home health nursing shortage was suddenly resolved
If you’ve read at least a few of my columns, you know that I hold on tightly to hope. It’s what keeps me plowing through the rough terrain of problems and crises, as my faith tells me that, one…
Columns
Man with SMA type 4 shows rare fake muscle enlargement in calf: Report
The case of a 51-year-old man ultimately diagnosed with spinal muscular atrophy (SMA) type 4 is believed to mark the first time this form of the rare genetic disease has had as its main…
When friends become disability advocates
“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea…
Women with SMA can have successful pregnancies with team-based care
Women with spinal muscular atrophy (SMA) can experience successful pregnancies and give birth to healthy babies when supported by specialist, team-based care, according to a U.K. case series. The report followed eight pregnancies in six women…
Test using zebrafish model helps doctors rule out SMA in 2 infants
A rapid test using zebrafish was able to show that two children identified by genetic testing as possibly having spinal muscular atrophy (SMA) did not actually have the progressive disease, according to a new study.
Temperature regulation is challenging, but vital with SMA
It’s been almost a year since I moved into my new house, and I’m still working to get everything the way I want and need it. I’ve always loved warm temperatures. As long as I stay hydrated, the…
When an SMA diagnosis makes a headline — and when it doesn’t
SMA doesn’t usually make headlines unless the person affected is famous. When Jesy Nelson, former lead singer of Little Mix, shared that her newborn twin daughters had been diagnosed with…
Nothing prepared us for the SMA diagnosis of our surprise baby
My husband, Randy, and I had never considered leaving our hometown of Fort Worth, Texas. That all changed when Randy received an unexpected coaching offer in South Carolina. With little time to prepare for such a…
Why Universal Studios Singapore didn’t feel inclusive for me
The Lights, Camera, Action! attraction at Universal Studios Singapore was just as I remembered it. Without missed or delayed cues, fans blew harsh winds, sprinklers rained, sound effects thundered, lights flashed, and a ginormous boat barged…
Promising mouse study lays foundation for first gene therapy trial in SMARD1
Treatment with gene therapy significantly prolonged survival and improved motor function in a mouse model of spinal muscular atrophy with respiratory distress type 1 (SMARD1), researchers report. The gene therapy tested in this lab…
Recent Posts
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- Guest Voice: Episodes of tachycardia have become my new normal
- SMA advocates share practical tips for work, dating, and travel
- I’ve learned to savor moments of solitude in life with SMA
- When caregivers are strong enough to carry groceries and true friendship