Scoliosis is a common complication in children with spinal muscular atrophy (SMA). Scoliosis is characterized by a curvature of the spine (usually to one side) and is caused by a weakening of the muscles that support the spine as the disease progresses. It is also known as kyphosis. MORE:…
An Australian couple is still reeling from the devastating news that their 12-week-old daughter has spinal muscular atrophy (SMA) type 1. SMA is a rare genetic disease that until Mackenzie’s diagnosis, her parents had never heard of. MORE: Detecting SMA with carrier screening. According to a report in the…
According to the Muscular Dystrophy Association, people living with spinal muscular atrophy (SMA) should try to engage in as many physical activities as they can without overexerting themselves. MORE: 11 function and mobility aids for people with SMA. Physical activity will not only help keep…
Sixteen-year-old Royce Jones from Indianapolis was diagnosed with spinal muscular atrophy (SMA) type 3 at 18 months old. However, Royce has steadfastly refused to let the genetic disease stop him from doing what he wants in life. If he can’t do something the standard way, then he does it the “Royce Way,”…
https://www.youtube.com/watch?v=aKuUzfZCnyE In this video from Neurology Today, Dr. Brent Fogel, an associate professor of neurology and human genetics at the University of California, Los Angeles discusses two different types of treatment for spinal muscular atrophy (SMA). MORE: Nine commonly asked questions about Spinraza. Dr. Fogel talks…
If your child has spinal muscular atrophy (SMA), then it’s likely that their care will come from different areas of health, including physical therapists, but what kind of physical therapist is right for treating your child? The American Physical Therapy Association (APTA) has come up with…
Alexander Davis is a nine-year-old boy from Tipton, Indiana who is embarking on a new journey in his treatment for spinal muscular atrophy (SMA). Alexander was diagnosed with SMA type 2 at the age of one and has just received his first injection of the newly FDA-approved drug, Spinraza (nusinersen).
The decision to screen for genetic diseases like spinal muscular atrophy or cystic fibrosis is very personal. Generally speaking, only those who are at risk of being a carrier due to a family history of SMA or a similar disease are advised to undergo screening before starting a family,…
This video from Attitude is all about 10-year-old Maija Fredrichberg from New Zealand. Maija describes herself as “a girl with a big imagination” — she enjoys all the things other 10-year-old girls enjoy doing and wants to be a pop star she grows up. She talks about her…
A neuromuscular disorder diagnosis will have a profound effect on the whole family. Younger siblings often don’t fully understand what a neuromuscular disorder is or what it means for their brother or sister. MORE: How to talk to your child about their neuromuscular disorder. It’s best to be upfront and…
