SMA Presentation and Mimics
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Columns
Counting my blessings during a crisis allows me to weather the storm
When my great-aunt was 100, she used to sing a song that said “count your many blessings.” As I approach another birthday and complete another year on my journey with SMA, I’m counting my…
Muscle ultrasound helps assess SMA in children treated with approved drug
Muscle ultrasound helps assess muscle health and its association with motor function in children with spinal muscular atrophy (SMA) treated with Spinraza (nusinersen), according to a recent study. While the findings varied by muscle group…
Honoring the proud histories of queer and disabled communities
One of the queerest ways to spend Pride Month could go like this … You decide to go to the theater one night. You scan the ticketing site for a show and land on one about lesbian identity,…
SMA gene therapy now approved in Europe to treat patients of all ages
The one-time gene therapy Itvisma (onasemnogene abeparvovec-brve) is now approved in the European Union for people with spinal muscular atrophy (SMA) ages 2 and older — a regulatory decision that will make…
Guest Voice: What Medicaid access means to me as someone with SMA
When people talk about Medicaid, it often sounds distant or technical. It is usually discussed in terms of coverage, rules, or eligibility. For me, Medicaid is much more personal. It shows up in my…
New Evrysdi study uncovers genetic differences in SMA types
A study in adults with spinal muscular atrophy (SMA) found that Evrysdi (risdiplam) helps the body produce more functional SMN protein, and also revealed molecular differences between SMA types 2 and 3 that may affect how…
I’m adapting to a new trend in life with SMA: Less frequent hospitalizations
A former caregiver and friend once told me that she’d never spent a night in the hospital for any kind of illness or injury. Despite working as a nurse and surrounding herself with medical…
How a clap app helps me express joy and appreciation
Over the course of three days, I recently had the joy of attending three live music concerts, each with its own distinct setting, energy, and story. I knew the performers, I loved the music, and I was…
For my 31st birthday, I’m finally moving out of my childhood home
Every March, I connect with a county worker to reassess my waiver, which is a federally financed Medicaid budget covering home- and community-based programs. The questions are always the same: How has my health been…