Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease. Since January, a new day nurse has been doing her best to provide these things for me. Her excellent care helps to protect…
Children with spinal muscular atrophy (SMA) who have two or fewer copies of the SMN2 gene — a feature typically associated with more severe disease — are more likely to start treatment early and reach key motor milestones if they are diagnosed through screening programs, a U.S. survey study suggests.
Discussion
I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills. So, when my friend told me as we rode in the car one day that my balance was really…
A panel of experts has developed the first U.K. national consensus recommendations for preventing and managing hip problems in children with spinal muscular atrophy (SMA), aiming to support earlier monitoring and more consistent care in the era of disease-modifying treatments. The recommendations emphasize a more proactive and individualized approach…
Discussion
Our journey began long before my son, Hussein, was born. Due to a family history of SMA, my husband underwent genetic testing to be sure he was not a carrier. We received news that he was clear, and based on that reassurance, I was not tested. We believed the…
A new high-dose regimen of Spinraza (nusinersen) was recently approved in the U.S. as a treatment for spinal muscular atrophy (SMA), with clinical trial data showing a safety profile broadly consistent with the original 12 mg regimen, first approved a decade ago, and suggesting the potential for greater…
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